#dysautonomia advocacy foundation

[potsiespoons]

[Image descriptions under the cut.]

My latest comic for Dysautonomia Advocacy Foundation is all about adrenaline! My body is always living in a state of fight-or-flight, so small stresses and sudden noises can send me into a surprisingly large tailspin. If the same thing happens to you, here’s some info on why it happens, what adrenaline can do to your body, and how you can help calm yourself down again!

[Images are a comic all about ADRENALINE! The first panel has a picture of a tiny Potsie flailing her arms and legs and screaming, and beneath that it reads, “Some dysautonomia patients have what we will call an ‘over-exuberant adrenaline response’ to small stressors--and, in some cases, even to mundane, daily events! Let’s look at some ways adrenaline affects your body...” The second image continues, “When you’re in a dangerous situation, your adrenaline spikes to help you fight for your life or flee to safety. This state is called fight-or-flight.” Below this is a picture of Potsie and a confused bear. Potsie shouts at it, “Come at me, bear!” The comic continues: “Since fight-or-flight is controlled by the autonomic system, it can be affected by dysautonomia. This can create some problems.” Below this is a drawing of Potsie running from Susan, again screaming. Susan calls to her, “I just dropped a spoon!” The third image says, “Symptoms of an over-exuberant adrenaline response include:” Below this is a picture of an anxious-looking Potsie with lots of arrows pointing to her, each arrow connected to a symptom. Here are the symptoms: Huge pupils! Giant jump in anxiety! Palpitations/chest pain! Fast and shallow breathing! Shakiness! Extra sweating! You probably need to poop! Also your GI tract slows down! Super tense muscles! An overwhelming urge to RUUUUUUUUN!!” The third image says, “If you experience fight-or-flight often, here are some things you can do to help calm your body down:” Below this are three drawings--the first is Potsie breathing, and beside her it says, “Slow, controlled breathing! Inhale - 4 seconds, Hold - 7 seconds, Exhale - 8 seconds.” The second drawing is a pencil and paper, book, cards, and a video game--above and next to these it says, “Distract yourself!” and “Draw! Read! Play!” The third drawing is Potsie walking away, saying, “Peace out, homeslice!” and above her it reads, “Remove yourself from the stressful situation!” THE END.]

[slowlymadeart]

This is fanart I made for @potsiespoons to celebrate her acceptance from NASA to attend the Orion Ascent Abort Test at Kennedy Space Center as part of #NASASocial :D

Vanessa Matelski aka @potsiespoons is a chronic illness advocate who creates humorous comics on dealing with Chronic illness and Disability, most notably Postural Orthostatic Tachycardia (POTs). Some of her endeavors including teaming up with the Dysautonomia Advocacy Foundation (DAF) to create comics focused on educating patients and public alike, as well as having her articles published on The Mighty! 

In her words;

 “Chronic illness isn't a lot of fun--so I make comics to amuse myself, educate others, and let my fellow chronic illness peeps know they're not alone. Laughter might not actually cure anything--but it takes a lot less energy than crying!”

Her work is jam-packed with heart and I am extremely glad it exist. So learn more and support Vanessa on the sites below!

Website / Insta / Twitter / Society6 / Etsy / Facebook / YouTube

She could also use financial aid to help with travel expenses on her trip to NASA. So if you’d like to contribute or spread the word be sure to check out her Go-Fund-Me page!

[edsenger]

Top 10 | Healthcare Collaborator

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Healthcare Collaborator Award

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.

  Melissa Talwar | Fibromyalgia Patient Leader

2019 Healthcare Collaborator: Patient Winner

Melissa’s advocacy work started in the early 2000’s, and she was part of the first Fibromyalgia group in Sacramento for the first Fibromyalgia Proclamation. That day ignited a passion to pursue advocacy work and find better answers for the Fibromyalgia community. She continues to bring Fibromyalgia education to patients across the country and to legislators at Capitol Hill. Be sure to connect and she’ll see you on the road!

Follow the WEGO Health Award winner on social.

AutonomicRN | Dysautonomia Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“RN turned full time patient. After Dysautonomia turned my life upside down, I was forced to figure out the new normal. While each day constantly brings change and unpredictability, I’ve been able to use my experiences to give a voice to those who don’t have one. Through blogging, online advocacy, and serving on a National Leadership Team for a nonprofit as Medical, Clinical Liaison and also on their Advocacy Team, my voice now reaches individuals globally. While I loved bedside nursing, I never thought about the reach that I possibly could have on a global level. Connecting with so many patient leaders, advocates, and members of health care teams has been invaluable and has allowed me to forge new relationships that I never thought was possible.”

It’s with a heavy heart we share Kim has since passed, but please learn more about her journey and become inspired by her work.

Stacy Hurt | Cancer Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I am a passionate, outspoken health care strategist and activist. Having been a healthcare executive for 20+ years and advocating for both my disabled/special needs son and myself as a stage IV colorectal cancer survivor, I understand the need for connection and collaboration between health care professionals and patients. Empathy and communication are greatly lacking, and I am the authentic voice to bridge that gap. I am particularly interested in survivorship, invisible disabilities, patient centricity, and #doingawareness (as opposed to just “raising” awareness).”

Add Stacy to your feeds to stay updated on her advocacy.

Brianna Cardenas | Ehlers Danlos Syndrome Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“As a Physician Assistant with EDS and a CSF leak, my goal is to raise awareness about these conditions both online and amongst my colleagues in the medical field. I now work as a professor in a PA program and teach my students about EDS, CSF leaks, and other chronic illnesses and how they impact patients. I am grateful for my perspective from both sides of the stethoscope and will continue to advocate for better healthcare for all of us!”

Learn more about the important work Brianna is doing and follow her on social. 

Liz Kennerley | Rare Disease Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I’m a mitochondrial disease patient and volunteer federal health policy lobbyist. My primary focus will always be rare disease legislation. However, in order to completely advocate for the 1 in 10 Americans with a rare condition other areas of health policy had to become a priority. While the legislative priorities are to help patients like all of us, the angle, legislation, and discussion are different each time. On the Hill, I have advocated alongside pharmaceutical CEOs, scientists, doctors, and patients.”

Check out Liz’s advocacy on Capitol Hil and beyond. 

Amanda Greene | Lupus Patient Leader

“As a Patient Leader, Amanda encourages other people to become your own best advocate and start by sharing their story to impact and inspire healthcare organizations to collaborate with patient communities. Amanda is known for sharing her personal healthcare experience wherever she is – whether on stage (as a keynote speaker or panelist), writing a guest post for a national healthcare organization or online.”

Follow Amanda on social.

Paolo Maccallini | ME/CFS Patient Leader

“A lot of patients have asked me why I use my little energies to study my disease, instead of just waiting for science to conquer it.There are many reasons, the first one being that I am desperate because of the cognitive disability that is worse than death. I am not concerned about the physical limitations, at all, even though I have been mostly housebound for the last 20 years. Another reason is that I like computational biology, and I started studying engineering before getting sick with the idea of switching to bioengineering after graduating. So, this is my job.”

Stay updated about Paolo’s advocacy work.

Barby Ingle | Chronic Pain Patient Leader

Cheerleader of HOPE – Barby Ingle, BSc, is an Amazon bestselling author, reality television personality, and president of International Pain Foundation (iPain) sharing her powerful story about life-changing events that forced life reflection, purpose, and her journey from wheels to heals. Barby has a degree in Social Psychology from George Mason University and more than 20 years of living with chronic pain and 30 years of motivational speaking experience.

Want to learn more about Barby? Click here to follow her on social. 

Tom Kindlon | ME Patient Leader

“After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill & disabled for a long period, possibly indefinitely, a prospect that wasn’t appealing. Moreover, I realised that there wasn’t a huge effort to research the illness well; it wasn’t on the radar the way many other conditions were. I have been busy for the last 23 years working away as a (voluntary) ME activist. Much of what I concentrated on in the early years was raising awareness & understanding in Ireland with the Irish ME/CFS Association. I have done around 50 media interviews & have been featured in most of the national newspapers in Ireland. I have written dozens of press releases & have helped arrange for around 130 Irish families affected with ME to tell their story over the years in over 400 interviews. A lot more people are diagnosed here now & attitudes have improved.”

Follow Tom to be educated and inspired.

Brooke Schnittman | ADHD Patient Leader

Brooke Schnittman, MA, ACC, BCC, has been nominated for multiple awards including “Best In Show Community” and”Advocating For Another.” She is the creator of What’s Next and ADHDEdCamp. When working with clients, it is Brooke’s mission to empower them to achieve their personal goals and break through the obstacles that seem to be holding them back in life.

Add some inspiration to your feeds by following Brooke.

  The post Top 10 | Healthcare Collaborator appeared first on WEGO Health.

Top 10 | Healthcare Collaborator published first on https://brightendentalhouston.weebly.com/

[lauramalchowblog]

Top 10 | Healthcare Collaborator

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Healthcare Collaborator Award

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.

  Melissa Talwar | Fibromyalgia Patient Leader

2019 Healthcare Collaborator: Patient Winner

Melissa’s advocacy work started in the early 2000’s, and she was part of the first Fibromyalgia group in Sacramento for the first Fibromyalgia Proclamation. That day ignited a passion to pursue advocacy work and find better answers for the Fibromyalgia community. She continues to bring Fibromyalgia education to patients across the country and to legislators at Capitol Hill. Be sure to connect and she’ll see you on the road!

Follow the WEGO Health Award winner on social.

AutonomicRN | Dysautonomia Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“RN turned full time patient. After Dysautonomia turned my life upside down, I was forced to figure out the new normal. While each day constantly brings change and unpredictability, I’ve been able to use my experiences to give a voice to those who don’t have one. Through blogging, online advocacy, and serving on a National Leadership Team for a nonprofit as Medical, Clinical Liaison and also on their Advocacy Team, my voice now reaches individuals globally. While I loved bedside nursing, I never thought about the reach that I possibly could have on a global level. Connecting with so many patient leaders, advocates, and members of health care teams has been invaluable and has allowed me to forge new relationships that I never thought was possible.”

It’s with a heavy heart we share Kim has since passed, but please learn more about her journey and become inspired by her work.

Stacy Hurt | Cancer Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I am a passionate, outspoken health care strategist and activist. Having been a healthcare executive for 20+ years and advocating for both my disabled/special needs son and myself as a stage IV colorectal cancer survivor, I understand the need for connection and collaboration between health care professionals and patients. Empathy and communication are greatly lacking, and I am the authentic voice to bridge that gap. I am particularly interested in survivorship, invisible disabilities, patient centricity, and #doingawareness (as opposed to just “raising” awareness).”

Add Stacy to your feeds to stay updated on her advocacy.

Brianna Cardenas | Ehlers Danlos Syndrome Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“As a Physician Assistant with EDS and a CSF leak, my goal is to raise awareness about these conditions both online and amongst my colleagues in the medical field. I now work as a professor in a PA program and teach my students about EDS, CSF leaks, and other chronic illnesses and how they impact patients. I am grateful for my perspective from both sides of the stethoscope and will continue to advocate for better healthcare for all of us!”

Learn more about the important work Brianna is doing and follow her on social. 

Liz Kennerley | Rare Disease Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I’m a mitochondrial disease patient and volunteer federal health policy lobbyist. My primary focus will always be rare disease legislation. However, in order to completely advocate for the 1 in 10 Americans with a rare condition other areas of health policy had to become a priority. While the legislative priorities are to help patients like all of us, the angle, legislation, and discussion are different each time. On the Hill, I have advocated alongside pharmaceutical CEOs, scientists, doctors, and patients.”

Check out Liz’s advocacy on Capitol Hil and beyond. 

Amanda Greene | Lupus Patient Leader

“As a Patient Leader, Amanda encourages other people to become your own best advocate and start by sharing their story to impact and inspire healthcare organizations to collaborate with patient communities. Amanda is known for sharing her personal healthcare experience wherever she is – whether on stage (as a keynote speaker or panelist), writing a guest post for a national healthcare organization or online.”

Follow Amanda on social.

Paolo Maccallini | ME/CFS Patient Leader

“A lot of patients have asked me why I use my little energies to study my disease, instead of just waiting for science to conquer it.There are many reasons, the first one being that I am desperate because of the cognitive disability that is worse than death. I am not concerned about the physical limitations, at all, even though I have been mostly housebound for the last 20 years. Another reason is that I like computational biology, and I started studying engineering before getting sick with the idea of switching to bioengineering after graduating. So, this is my job.”

Stay updated about Paolo’s advocacy work.

Barby Ingle | Chronic Pain Patient Leader

Cheerleader of HOPE – Barby Ingle, BSc, is an Amazon bestselling author, reality television personality, and president of International Pain Foundation (iPain) sharing her powerful story about life-changing events that forced life reflection, purpose, and her journey from wheels to heals. Barby has a degree in Social Psychology from George Mason University and more than 20 years of living with chronic pain and 30 years of motivational speaking experience.

Want to learn more about Barby? Click here to follow her on social. 

Tom Kindlon | ME Patient Leader

“After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill & disabled for a long period, possibly indefinitely, a prospect that wasn’t appealing. Moreover, I realised that there wasn’t a huge effort to research the illness well; it wasn’t on the radar the way many other conditions were. I have been busy for the last 23 years working away as a (voluntary) ME activist. Much of what I concentrated on in the early years was raising awareness & understanding in Ireland with the Irish ME/CFS Association. I have done around 50 media interviews & have been featured in most of the national newspapers in Ireland. I have written dozens of press releases & have helped arrange for around 130 Irish families affected with ME to tell their story over the years in over 400 interviews. A lot more people are diagnosed here now & attitudes have improved.”

Follow Tom to be educated and inspired.

Brooke Schnittman | ADHD Patient Leader

Brooke Schnittman, MA, ACC, BCC, has been nominated for multiple awards including “Best In Show Community” and”Advocating For Another.” She is the creator of What’s Next and ADHDEdCamp. When working with clients, it is Brooke’s mission to empower them to achieve their personal goals and break through the obstacles that seem to be holding them back in life.

Add some inspiration to your feeds by following Brooke.

  The post Top 10 | Healthcare Collaborator appeared first on WEGO Health.

Top 10 | Healthcare Collaborator published first on https://venabeahan.tumblr.com

[jesseneufeld]

Top 10 | Healthcare Collaborator

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Healthcare Collaborator Award

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.

  Melissa Talwar | Fibromyalgia Patient Leader

2019 Healthcare Collaborator: Patient Winner

Melissa’s advocacy work started in the early 2000’s, and she was part of the first Fibromyalgia group in Sacramento for the first Fibromyalgia Proclamation. That day ignited a passion to pursue advocacy work and find better answers for the Fibromyalgia community. She continues to bring Fibromyalgia education to patients across the country and to legislators at Capitol Hill. Be sure to connect and she’ll see you on the road!

Follow the WEGO Health Award winner on social.

AutonomicRN | Dysautonomia Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“RN turned full time patient. After Dysautonomia turned my life upside down, I was forced to figure out the new normal. While each day constantly brings change and unpredictability, I’ve been able to use my experiences to give a voice to those who don’t have one. Through blogging, online advocacy, and serving on a National Leadership Team for a nonprofit as Medical, Clinical Liaison and also on their Advocacy Team, my voice now reaches individuals globally. While I loved bedside nursing, I never thought about the reach that I possibly could have on a global level. Connecting with so many patient leaders, advocates, and members of health care teams has been invaluable and has allowed me to forge new relationships that I never thought was possible.”

It’s with a heavy heart we share Kim has since passed, but please learn more about her journey and become inspired by her work.

Stacy Hurt | Cancer Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I am a passionate, outspoken health care strategist and activist. Having been a healthcare executive for 20+ years and advocating for both my disabled/special needs son and myself as a stage IV colorectal cancer survivor, I understand the need for connection and collaboration between health care professionals and patients. Empathy and communication are greatly lacking, and I am the authentic voice to bridge that gap. I am particularly interested in survivorship, invisible disabilities, patient centricity, and #doingawareness (as opposed to just “raising” awareness).”

Add Stacy to your feeds to stay updated on her advocacy.

Brianna Cardenas | Ehlers Danlos Syndrome Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“As a Physician Assistant with EDS and a CSF leak, my goal is to raise awareness about these conditions both online and amongst my colleagues in the medical field. I now work as a professor in a PA program and teach my students about EDS, CSF leaks, and other chronic illnesses and how they impact patients. I am grateful for my perspective from both sides of the stethoscope and will continue to advocate for better healthcare for all of us!”

Learn more about the important work Brianna is doing and follow her on social. 

Liz Kennerley | Rare Disease Patient Leader

2019 Healthcare Collaborator: Patient Finalist

“I’m a mitochondrial disease patient and volunteer federal health policy lobbyist. My primary focus will always be rare disease legislation. However, in order to completely advocate for the 1 in 10 Americans with a rare condition other areas of health policy had to become a priority. While the legislative priorities are to help patients like all of us, the angle, legislation, and discussion are different each time. On the Hill, I have advocated alongside pharmaceutical CEOs, scientists, doctors, and patients.”

Check out Liz’s advocacy on Capitol Hil and beyond. 

Amanda Greene | Lupus Patient Leader

“As a Patient Leader, Amanda encourages other people to become your own best advocate and start by sharing their story to impact and inspire healthcare organizations to collaborate with patient communities. Amanda is known for sharing her personal healthcare experience wherever she is – whether on stage (as a keynote speaker or panelist), writing a guest post for a national healthcare organization or online.”

Follow Amanda on social.

Paolo Maccallini | ME/CFS Patient Leader

“A lot of patients have asked me why I use my little energies to study my disease, instead of just waiting for science to conquer it.There are many reasons, the first one being that I am desperate because of the cognitive disability that is worse than death. I am not concerned about the physical limitations, at all, even though I have been mostly housebound for the last 20 years. Another reason is that I like computational biology, and I started studying engineering before getting sick with the idea of switching to bioengineering after graduating. So, this is my job.”

Stay updated about Paolo’s advocacy work.

Barby Ingle | Chronic Pain Patient Leader

Cheerleader of HOPE – Barby Ingle, BSc, is an Amazon bestselling author, reality television personality, and president of International Pain Foundation (iPain) sharing her powerful story about life-changing events that forced life reflection, purpose, and her journey from wheels to heals. Barby has a degree in Social Psychology from George Mason University and more than 20 years of living with chronic pain and 30 years of motivational speaking experience.

Want to learn more about Barby? Click here to follow her on social. 

Tom Kindlon | ME Patient Leader

“After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill & disabled for a long period, possibly indefinitely, a prospect that wasn’t appealing. Moreover, I realised that there wasn’t a huge effort to research the illness well; it wasn’t on the radar the way many other conditions were. I have been busy for the last 23 years working away as a (voluntary) ME activist. Much of what I concentrated on in the early years was raising awareness & understanding in Ireland with the Irish ME/CFS Association. I have done around 50 media interviews & have been featured in most of the national newspapers in Ireland. I have written dozens of press releases & have helped arrange for around 130 Irish families affected with ME to tell their story over the years in over 400 interviews. A lot more people are diagnosed here now & attitudes have improved.”

Follow Tom to be educated and inspired.

Brooke Schnittman | ADHD Patient Leader

Brooke Schnittman, MA, ACC, BCC, has been nominated for multiple awards including “Best In Show Community” and”Advocating For Another.” She is the creator of What’s Next and ADHDEdCamp. When working with clients, it is Brooke’s mission to empower them to achieve their personal goals and break through the obstacles that seem to be holding them back in life.

Add some inspiration to your feeds by following Brooke.

  The post Top 10 | Healthcare Collaborator appeared first on WEGO Health.

Top 10 | Healthcare Collaborator published first on https://drugaddictionsrehab.tumblr.com/

[potsiespoons]

[Image description under the cut because it’s a 10-panel comic and yikes.]

My latest comic with Dysautonomia Advocacy Foundation! I had posted on my Instagram about feeling lonely, and because loneliness is a pretty common chronic illness thing, they asked if I’d tackle it in a comic. If you know somebody with a chronic illness, please don’t forget to check in with them and make sure they’re doing okay! And if you have a chronic illness, there are lots of ways to reach out to people who understand your condition! It’s always important to remember that, even if you feel lonely, you’re not alone. <3

Image description: The first panel says, “Let’s talk...Loneliness!” with a stick-figure girl--Potsie--standing beneath it. She’s holding a cassette tape and saying, “The following comic is best read while listening to this great mixtape I made!” The mixtape is titled, “Potsie’s Lonely Mix, Vol. 1″ and contains the following songs: One is the Loneliest Number, Magic Stones, So Lonely, another song called So Lonely, Piano Man (it has a line about loneliness okay), Dancing with Myself, Mr. Lonely, and Eleanor Rigby. 

The second panel says, “Loneliness is one of those things that everyone has to deal with from time to time, but those with chronic illnesses may experience loneliness much more frequently than the average, healthy human,” and has a drawing of Potsie sighing. Beside her it says, “The loneliness of the average, healthy turtle has yet to be determined, as people generally don’t think to ask a turtle how it’s doing.” There is also a sighing turtle.

The third panel says, “You won’t find loneliness listed as a symptom in official diagnoses or Google searches, but that doesn’t make it any less real or easier to deal with.” Potsie stands by and says, “Actually, the fact that it’s not really mentioned anywhere probably makes it harder to deal with...”

The fourth panel says, “Chronic illnesses are often disabling, due to pain, fatigue, and other various symptoms. Because of this, many chronic illness patients find it difficult to work or go to school--the usual places where people meet other people. It can also be hard for them to go on outings or to events with friends. It’s not because they don’t want to go, it’s because their bodies say they can’t go.” Potsie is sitting in a comfy chair with a book and says, “The heart wants what the body refuses to give...”

The fifth panel says, “This all adds up to many chronic illness patients becoming involuntary hermits.” There is a picture of a surprised Potsie in a rocking chair, next to an older dude in a rocking chair. He is smoking and holding a shotgun--and he also happens to be my high school AP Lit teacher, whose retirement goals included sitting on his porch with a shotgun, smoking stale cigarettes, and drinking generic beer while yelling at punks to get off his lawn. True story. The comic goes on to say, “And while books and Netflix are great, they’re no substitute for human interaction. Enter: Loneliness.” There is another picture of Potsie in her comfy chair with her book, but this time she is SHOCKED as another figure, named Loneliness, bursts through the door and shouts, “WHO’S READY TO WALLOW IN SELF-PITY?!”

The sixth panel says, “Those with chronic illnesses can feel especially lonely in a group of people, because their condition leads to a life that many healthy people can’t relate to, making it difficult to fit in.” Potsie is sitting with a group of people, feeling sad and uncomfortable and looking very left-out.

The seventh panel says, “People with chronic illnesses don’t want to be totally cut off from the world--we want to have friends, just like anybody else--but our physical conditions make interacting with the world difficult, and we have to navigate situations differently than our healthy peers.” Potsie stands at a sign that says, “This way!” ... “Or, uh, maybe this way...?”

The eighth panel says, “If you have a friend with a chronic illness, remember to reach out to them. Remind them that they are cared for and thought about! Invite them to easy going, accessible environments--or ask if it’s okay for you to go to them! Even a text conversation goes a long way towards cheering a person up.” Potsie is cuddled up in a blanket with her phone. She’s just gotten a text that says, “Thinking of u! Wanna chat?” and she is very happy.

The ninth panel says, “And if you have a chronic illness and feel lonely, there are things you can do, too! If you’re able to, look for chronic illness (or “spoonie”) meet-ups in your area--and if you can’t find any, consider starting one at your favorite coffee shop or local library! Getting to know your fellow chronic illness warriors is a great remedy to loneliness!” There is a drawing of Potsie sitting with a group of people, this time looking happy and engaged in the conversation. One of the others has a cane, one has an NG-tube, and one is in a wheelchair. 

The tenth panel says, “There are also a lot of online support groups, from Facebook groups to official organizations like DAF! Try to get connected with one of these communities--or even a few of them! After all, who said the friends you meet online aren’t real?” Potsie is sitting at her computer and answers the question: “Stupid people,” she says. “But we don’t listen to them, because they’re dumb. Hashtag sorry-not-sorry.”

THE END. 

[lauramalchowblog]

2018 Top 10 Healthcare Collaborator: Patient Leaders

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space. To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

This past week, the WEGO Health team divided and conquered to attend HealtheVoices (LINK) in Dallas, Eye for Pharma in Philadelphia and DTC in Boston. In honor of this busy (but exciting) conference season, we’re taking this week to recognize the Top 10 Healthcare Collaborator Patient Leaders.

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.

Amanda Greene

Lupus Patient Leader

Facebook | Twitter | Instagram

“Diagnosed with Lupus over 36 years ago, I openly share my healthcare story, resources and support online. I strive to raise awareness for Lupus, Chronic Pain, Fibromyalgia, Osteoarthritis and new technology (like “how Virtual Reality can help patients reduce their pain”) wherever I am, from Capitol Hill to participating in a healthcare chat on Twitter, or giving a keynote from the stage in New Orleans at the Health IT Expo conference. As a patient advocate, I believe that sharing patient stories are vital to improving the healthcare system.” Connect with the 2018 Healthcare Collaborator: Patient winner.

Jenni Grover Chronic Illness Patient Leader

Facebook | Twitter | Instagram

Jenni Grover is Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click here to learn more about Jenni and the Chronic Babe Community.

Julie Eller

Arthritis Patient Leader

Facebook | Twitter

“I’m a patient gone professional. Every day when I come to work at the Arthritis Foundation, I get to translate my personal polyarticular JIA experience into advocacy action as the manager of Grassroots Advocacy. My passion is helping to elevate patient stories to the center of our health policy decisions. It is my mission to empower patients to embrace their story, remember that they are the experts in their care, highlight that their voice matters, and affirm that patients are central to building a better world for people just like them.” Connect with Julie.

Lisa Rosenthal

Infertility & Family Planning Patient Leader

Facebook | Twitter

“Little did I know, 31 years ago, when I first started trying to become pregnant, that infertility and family building would become my life work. The disease of infertility is a thief, trying to rob us of the basic, fundamental right to have a family. It’s a disease that’s often dismissed as lifestyle, it’s often shrouded in shame. Like any other disease, we deserve insurance coverage, treatment, and support. I’ve advocated for ALL people who want to become parents, first through not for profits (Resolve and The American Fertility Association) and now with Reproductive Medicine Associates of Connecticut. I’m also a proud board member of Resolve New England. Click here to learn more about Lisa.

Danny van Leeuwen

MS Patient Leader

Twitter

An action catalyst empowering people traveling together toward best health. Wears many hats in healthcare: patient with MS, caregiver, nurse, informaticist and QI leader. Current work focuses on communication at transitions of care, person-centered health planning, informed decision-making, and technology supporting solutions created by and for people at the center. Serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support Learning Network. Reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness Advisory Panel. Active in the Society of Participatory Medicine. Recently published in BMJ. Blogs weekly: www.health-hats.com Click here to get to know Danny.

Amanda Marie

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“I understand the challenges that Dysautonomia and Ehlers-Danlos Syndrome can bring from the perspective of the patient, advocate, caregiver, and nurse. I have combined my professional knowledge and personal experience to create a patient-focused, global support network that encompasses 65 support, and lifestyle clubs, created to improve the patient experience. As the President of the Dysautonomia Support Network, I have had the privilege to create programs such as DSN volunteer programs, scholarships and service dog grant programs. In 2018 have educated, raised awareness with researchers at the NIH, lobbied for research funding on Captial Hill and presented patient workshops at conferences.” Follow Amanda’s journey.

Rachel- Rocking2Stomas

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“Hi, I’m Rachel and I am 31 years old and have been ill for 10 years with a rare condition called Pure Autonomic Failure where my bladder and bowel have failed to function. Due to this, I have 2 ostomies: an ileostomy and a urostomy and still am a regular inpatient due to recurrent sepsis. My blog is a platform to actively raise ostomy awareness and in particular urostomy awareness (the forgotten stoma). I talk about life with 2 stomas and work closely with stoma companies, Consultants, Nurses and Allied Healthcare professionals. I am passionate about being a voice for people who may have lost theirs to help improve patient care in the UK. I also support old and new ostomates.” Connect with Rachel.

Christine Von Raesfield

Lupus Patient Leader

Facebook | Twitter | Instagram

“I’m an advocate for lupus and other conditions, I‘m involved with a local Nonprofit and have met with representatives from pharmaceutical companies to government officials. As one of the 2018 Team of Advisers for PatientsLikeMe. I am working with them on the new DigitalMe platform and have become a face of the campaign. While extremely involved in the lupus community, I also run the social media and host a monthly FB Live with the Lupus Foundation of Northern California. I was recently chosen to be a part of the steering committee for the EyeForPharma 2018 Conference. As a patient who has sustained toxic poisoning, I try to use my experiences to teach others to advocate for themselves.” Click here to learn more about Christine.

Daniel G. Garza

HIV/AIDS Patient Leader

Facebook | Twitter | Instagram

HIV/AIDS Advocate, with a focus on education in prevention, since 2001, after being diagnosed in September 2000. First by educating his family and the Latino community, most recently high schools, colleges, and universities in Orange County California. With his podcast “Put It Together”, launched in 2012, now with over 200 episodes, where he talks to people from different backgrounds on their journeys through health, recovery, and life. Daniel has been a member of several committees; Ryan White Planning Council, Laguna Beach HIV Advisory Committee and Advisory Committee to HealtheVoices 2018. Where he was able to present a workshop on podcasting as well as host a Latino breakout session. Learn more and follow Daniel.

Claire Snyman

Patient Leader

Facebook | Twitter

Claire Snyman is an author, blogger, and advocate for patient and healthcare collaboration. She is passionate about inspiring people to put their health in their own hands. Since being diagnosed in 2010 with a non-malignant brain tumor and brain surgery in 2012, she realized the importance of partnering with her healthcare team and becoming her body’s own advocate. She co-authored a scientific study between neurosurgeons and patients and is working on a second study on GBM. She has developed a TEAM Approach for Empowering patients – all with the end goal of achieving better patient outcomes. Claire recently spoke at TEDxStanleyPark 2018 on “putting your health in your own hands.” Connect with Claire.

Hats off to these passionate Patient Leaders! These individuals are at the forefront of changing healthcare and we could not be more honored to celebrate their achievements.

Don’t forget, we all start somewhere! Making keynote speeches at conferences isn’t necessary to make an impact. Check out the Top 10 Rookie of the Year Patient Leaders to get inspired by those just beginning their advocacy journey.

The post 2018 Top 10 Healthcare Collaborator: Patient Leaders appeared first on WEGO Health.

2018 Top 10 Healthcare Collaborator: Patient Leaders published first on https://venabeahan.tumblr.com

[jesseneufeld]

2018 Top 10 Healthcare Collaborator: Patient Leaders

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space. To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

This past week, the WEGO Health team divided and conquered to attend HealtheVoices (LINK) in Dallas, Eye for Pharma in Philadelphia and DTC in Boston. In honor of this busy (but exciting) conference season, we’re taking this week to recognize the Top 10 Healthcare Collaborator Patient Leaders.

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.

Amanda Greene

Lupus Patient Leader

Facebook | Twitter | Instagram

“Diagnosed with Lupus over 36 years ago, I openly share my healthcare story, resources and support online. I strive to raise awareness for Lupus, Chronic Pain, Fibromyalgia, Osteoarthritis and new technology (like “how Virtual Reality can help patients reduce their pain”) wherever I am, from Capitol Hill to participating in a healthcare chat on Twitter, or giving a keynote from the stage in New Orleans at the Health IT Expo conference. As a patient advocate, I believe that sharing patient stories are vital to improving the healthcare system.” Connect with the 2018 Healthcare Collaborator: Patient winner.

Jenni Grover Chronic Illness Patient Leader

Facebook | Twitter | Instagram

Jenni Grover is Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click here to learn more about Jenni and the Chronic Babe Community.

Julie Eller

Arthritis Patient Leader

Facebook | Twitter

“I’m a patient gone professional. Every day when I come to work at the Arthritis Foundation, I get to translate my personal polyarticular JIA experience into advocacy action as the manager of Grassroots Advocacy. My passion is helping to elevate patient stories to the center of our health policy decisions. It is my mission to empower patients to embrace their story, remember that they are the experts in their care, highlight that their voice matters, and affirm that patients are central to building a better world for people just like them.” Connect with Julie.

Lisa Rosenthal

Infertility & Family Planning Patient Leader

Facebook | Twitter

“Little did I know, 31 years ago, when I first started trying to become pregnant, that infertility and family building would become my life work. The disease of infertility is a thief, trying to rob us of the basic, fundamental right to have a family. It’s a disease that’s often dismissed as lifestyle, it’s often shrouded in shame. Like any other disease, we deserve insurance coverage, treatment, and support. I’ve advocated for ALL people who want to become parents, first through not for profits (Resolve and The American Fertility Association) and now with Reproductive Medicine Associates of Connecticut. I’m also a proud board member of Resolve New England. Click here to learn more about Lisa.

Danny van Leeuwen

MS Patient Leader

Twitter

An action catalyst empowering people traveling together toward best health. Wears many hats in healthcare: patient with MS, caregiver, nurse, informaticist and QI leader. Current work focuses on communication at transitions of care, person-centered health planning, informed decision-making, and technology supporting solutions created by and for people at the center. Serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support Learning Network. Reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness Advisory Panel. Active in the Society of Participatory Medicine. Recently published in BMJ. Blogs weekly: www.health-hats.com Click here to get to know Danny.

Amanda Marie

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“I understand the challenges that Dysautonomia and Ehlers-Danlos Syndrome can bring from the perspective of the patient, advocate, caregiver, and nurse. I have combined my professional knowledge and personal experience to create a patient-focused, global support network that encompasses 65 support, and lifestyle clubs, created to improve the patient experience. As the President of the Dysautonomia Support Network, I have had the privilege to create programs such as DSN volunteer programs, scholarships and service dog grant programs. In 2018 have educated, raised awareness with researchers at the NIH, lobbied for research funding on Captial Hill and presented patient workshops at conferences.” Follow Amanda’s journey.

Rachel- Rocking2Stomas

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“Hi, I’m Rachel and I am 31 years old and have been ill for 10 years with a rare condition called Pure Autonomic Failure where my bladder and bowel have failed to function. Due to this, I have 2 ostomies: an ileostomy and a urostomy and still am a regular inpatient due to recurrent sepsis. My blog is a platform to actively raise ostomy awareness and in particular urostomy awareness (the forgotten stoma). I talk about life with 2 stomas and work closely with stoma companies, Consultants, Nurses and Allied Healthcare professionals. I am passionate about being a voice for people who may have lost theirs to help improve patient care in the UK. I also support old and new ostomates.” Connect with Rachel.

Christine Von Raesfield

Lupus Patient Leader

Facebook | Twitter | Instagram

“I’m an advocate for lupus and other conditions, I‘m involved with a local Nonprofit and have met with representatives from pharmaceutical companies to government officials. As one of the 2018 Team of Advisers for PatientsLikeMe. I am working with them on the new DigitalMe platform and have become a face of the campaign. While extremely involved in the lupus community, I also run the social media and host a monthly FB Live with the Lupus Foundation of Northern California. I was recently chosen to be a part of the steering committee for the EyeForPharma 2018 Conference. As a patient who has sustained toxic poisoning, I try to use my experiences to teach others to advocate for themselves.” Click here to learn more about Christine.

Daniel G. Garza

HIV/AIDS Patient Leader

Facebook | Twitter | Instagram

HIV/AIDS Advocate, with a focus on education in prevention, since 2001, after being diagnosed in September 2000. First by educating his family and the Latino community, most recently high schools, colleges, and universities in Orange County California. With his podcast “Put It Together”, launched in 2012, now with over 200 episodes, where he talks to people from different backgrounds on their journeys through health, recovery, and life. Daniel has been a member of several committees; Ryan White Planning Council, Laguna Beach HIV Advisory Committee and Advisory Committee to HealtheVoices 2018. Where he was able to present a workshop on podcasting as well as host a Latino breakout session. Learn more and follow Daniel.

Claire Snyman

Patient Leader

Facebook | Twitter

Claire Snyman is an author, blogger, and advocate for patient and healthcare collaboration. She is passionate about inspiring people to put their health in their own hands. Since being diagnosed in 2010 with a non-malignant brain tumor and brain surgery in 2012, she realized the importance of partnering with her healthcare team and becoming her body’s own advocate. She co-authored a scientific study between neurosurgeons and patients and is working on a second study on GBM. She has developed a TEAM Approach for Empowering patients – all with the end goal of achieving better patient outcomes. Claire recently spoke at TEDxStanleyPark 2018 on “putting your health in your own hands.” Connect with Claire.

Hats off to these passionate Patient Leaders! These individuals are at the forefront of changing healthcare and we could not be more honored to celebrate their achievements.

Don’t forget, we all start somewhere! Making keynote speeches at conferences isn’t necessary to make an impact. Check out the Top 10 Rookie of the Year Patient Leaders to get inspired by those just beginning their advocacy journey.

The post 2018 Top 10 Healthcare Collaborator: Patient Leaders appeared first on WEGO Health.

2018 Top 10 Healthcare Collaborator: Patient Leaders published first on https://drugaddictionsrehab.tumblr.com/

[edsenger]

2018 Top 10 Healthcare Collaborator: Patient Leaders

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space. To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.

This past week, the WEGO Health team divided and conquered to attend HealtheVoices (LINK) in Dallas, Eye for Pharma in Philadelphia and DTC in Boston. In honor of this busy (but exciting) conference season, we’re taking this week to recognize the Top 10 Healthcare Collaborator Patient Leaders.

These Patient Leaders understand healthcare from the patient perspective, but they are also professionals with the skills and ability to help companies advance their most critical patient-facing initiatives. Speaking at conferences, consulting with healthcare companies, using their education to help make a change in the healthcare industry – these Patient Leaders are bridging the gap between industry stakeholders and healthcare consumers.

Amanda Greene

Lupus Patient Leader

Facebook | Twitter | Instagram

“Diagnosed with Lupus over 36 years ago, I openly share my healthcare story, resources and support online. I strive to raise awareness for Lupus, Chronic Pain, Fibromyalgia, Osteoarthritis and new technology (like “how Virtual Reality can help patients reduce their pain”) wherever I am, from Capitol Hill to participating in a healthcare chat on Twitter, or giving a keynote from the stage in New Orleans at the Health IT Expo conference. As a patient advocate, I believe that sharing patient stories are vital to improving the healthcare system.” Connect with the 2018 Healthcare Collaborator: Patient winner.

Jenni Grover Chronic Illness Patient Leader

Facebook | Twitter | Instagram

Jenni Grover is Founder of ChronicBabe.com, where she draws on her experience with fibromyalgia and other conditions to teach women to craft incredible lives in spite of illness. She’s been doing this work since Spring 2005. For more than 26 years, Jenni has enjoyed success as an activist, writer, editor, and consultant, helping women share stories of strength, wellness, and inspiration in the face of adversity. ChronicBabe’s offerings include a website, speaking engagements, multiple social media presences, a video series, a free newsletter, her book “ChronicBabe 101: How to Craft an Incredible Life Beyond Illness,” and more. Click here to learn more about Jenni and the Chronic Babe Community.

Julie Eller

Arthritis Patient Leader

Facebook | Twitter

“I’m a patient gone professional. Every day when I come to work at the Arthritis Foundation, I get to translate my personal polyarticular JIA experience into advocacy action as the manager of Grassroots Advocacy. My passion is helping to elevate patient stories to the center of our health policy decisions. It is my mission to empower patients to embrace their story, remember that they are the experts in their care, highlight that their voice matters, and affirm that patients are central to building a better world for people just like them.” Connect with Julie.

Lisa Rosenthal

Infertility & Family Planning Patient Leader

Facebook | Twitter

“Little did I know, 31 years ago, when I first started trying to become pregnant, that infertility and family building would become my life work. The disease of infertility is a thief, trying to rob us of the basic, fundamental right to have a family. It’s a disease that’s often dismissed as lifestyle, it’s often shrouded in shame. Like any other disease, we deserve insurance coverage, treatment, and support. I’ve advocated for ALL people who want to become parents, first through not for profits (Resolve and The American Fertility Association) and now with Reproductive Medicine Associates of Connecticut. I’m also a proud board member of Resolve New England. Click here to learn more about Lisa.

Danny van Leeuwen

MS Patient Leader

Twitter

An action catalyst empowering people traveling together toward best health. Wears many hats in healthcare: patient with MS, caregiver, nurse, informaticist and QI leader. Current work focuses on communication at transitions of care, person-centered health planning, informed decision-making, and technology supporting solutions created by and for people at the center. Serves on the Steering Committee of AHRQ’s Patient-Centered Clinical Decision Support Learning Network. Reviews PCORI research funding applications and serves as co-chair of PCORI’s Clinical Effectiveness Advisory Panel. Active in the Society of Participatory Medicine. Recently published in BMJ. Blogs weekly: www.health-hats.com Click here to get to know Danny.

Amanda Marie

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“I understand the challenges that Dysautonomia and Ehlers-Danlos Syndrome can bring from the perspective of the patient, advocate, caregiver, and nurse. I have combined my professional knowledge and personal experience to create a patient-focused, global support network that encompasses 65 support, and lifestyle clubs, created to improve the patient experience. As the President of the Dysautonomia Support Network, I have had the privilege to create programs such as DSN volunteer programs, scholarships and service dog grant programs. In 2018 have educated, raised awareness with researchers at the NIH, lobbied for research funding on Captial Hill and presented patient workshops at conferences.” Follow Amanda’s journey.

Rachel- Rocking2Stomas

Rare Disease Patient Leader

Facebook | Twitter | Instagram

“Hi, I’m Rachel and I am 31 years old and have been ill for 10 years with a rare condition called Pure Autonomic Failure where my bladder and bowel have failed to function. Due to this, I have 2 ostomies: an ileostomy and a urostomy and still am a regular inpatient due to recurrent sepsis. My blog is a platform to actively raise ostomy awareness and in particular urostomy awareness (the forgotten stoma). I talk about life with 2 stomas and work closely with stoma companies, Consultants, Nurses and Allied Healthcare professionals. I am passionate about being a voice for people who may have lost theirs to help improve patient care in the UK. I also support old and new ostomates.” Connect with Rachel.

Christine Von Raesfield

Lupus Patient Leader

Facebook | Twitter | Instagram

“I’m an advocate for lupus and other conditions, I‘m involved with a local Nonprofit and have met with representatives from pharmaceutical companies to government officials. As one of the 2018 Team of Advisers for PatientsLikeMe. I am working with them on the new DigitalMe platform and have become a face of the campaign. While extremely involved in the lupus community, I also run the social media and host a monthly FB Live with the Lupus Foundation of Northern California. I was recently chosen to be a part of the steering committee for the EyeForPharma 2018 Conference. As a patient who has sustained toxic poisoning, I try to use my experiences to teach others to advocate for themselves.” Click here to learn more about Christine.

Daniel G. Garza

HIV/AIDS Patient Leader

Facebook | Twitter | Instagram

HIV/AIDS Advocate, with a focus on education in prevention, since 2001, after being diagnosed in September 2000. First by educating his family and the Latino community, most recently high schools, colleges, and universities in Orange County California. With his podcast “Put It Together”, launched in 2012, now with over 200 episodes, where he talks to people from different backgrounds on their journeys through health, recovery, and life. Daniel has been a member of several committees; Ryan White Planning Council, Laguna Beach HIV Advisory Committee and Advisory Committee to HealtheVoices 2018. Where he was able to present a workshop on podcasting as well as host a Latino breakout session. Learn more and follow Daniel.

Claire Snyman

Patient Leader

Facebook | Twitter

Claire Snyman is an author, blogger, and advocate for patient and healthcare collaboration. She is passionate about inspiring people to put their health in their own hands. Since being diagnosed in 2010 with a non-malignant brain tumor and brain surgery in 2012, she realized the importance of partnering with her healthcare team and becoming her body’s own advocate. She co-authored a scientific study between neurosurgeons and patients and is working on a second study on GBM. She has developed a TEAM Approach for Empowering patients – all with the end goal of achieving better patient outcomes. Claire recently spoke at TEDxStanleyPark 2018 on “putting your health in your own hands.” Connect with Claire.

Hats off to these passionate Patient Leaders! These individuals are at the forefront of changing healthcare and we could not be more honored to celebrate their achievements.

Don’t forget, we all start somewhere! Making keynote speeches at conferences isn’t necessary to make an impact. Check out the Top 10 Rookie of the Year Patient Leaders to get inspired by those just beginning their advocacy journey.

The post 2018 Top 10 Healthcare Collaborator: Patient Leaders appeared first on WEGO Health.

2018 Top 10 Healthcare Collaborator: Patient Leaders published first on https://brightendentalhouston.weebly.com/

[jesseneufeld]

2018 Top 10 Best in Show: Twitter

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  These Top 10 Best in Show: Twitter Patient Leaders manage to create easily digestible 280 character tweets to support, educate and encourage their communities. Whether they’ve created their own Twitter chat, participate actively in others’ chats, push out words of encouragement – they are the model of Twitter for #health

      Ashley Levinson Sells 

PCOS Patient Leader

Facebook | Twitter | Instagram

Ashley has served PCOS and chronic illness communities for over 18 years. She actively participates with multiple PCOS and health organizations to advance education and awareness for PCOS and chronic illness in social media and continues to advocate for PCOS and chronic illness through awareness events and legislative action in D.C.

Founder, #LemonFaceChallenge & #Heart4PCOS social media campaigns. 2006 Discovery Health Channel – Mystery Diagnosis Lobbying #HRes864 and #SRes336 in DC 2016 Ricardo Azziz PCOS Challenge Leadership Award PCOSC Magazine, copy editor PCOSC Patient Advisory Board Speaking 2 Heart Network, Advisor PCOS Petition with 20K supporters Connect with the 2018 WEGO Health Awards Best in Show: Twitter winner, Ashley. 

    Jeff Borghogg

Younger Onset Alzheimer’s Patient Leader

Facebook | Twitter | Instagram

“In March of 2016 at the age of 51 I was diagnosed with Younger Onset / Early-Stage Alzheimer’s Disease. Since my diagnosis, I have been working with great fervor with the National Alzheimer’s Association as a member of the National Early-Stage Advisory Group and a Early-Stage Ambassador with the Delaware Valley & Greater NJ Early-Stage Advisory Councils and an Alzheimer’s Congressional Team member. I advocate and create awareness for younger-onset Alzheimer’s daily via social media channels like Twitter, Facebook, LinkedIn, Instagram and Google+. “ Learn more about Jeff. 

    Buddy Project

Mental Health

Facebook | Twitter | Instagram

Buddy Project is a non-profit movement that aims to prevent suicide and self-harm by pairing people as buddies and raising awareness for mental health. Since April 8th, 2013, Buddy Project has been pairing teens and young adults with a buddy. We pair based on mutual interest and age. As of March 7th, 2018, over 211,000 people have signed up to be paired with a buddy. We are currently working on creating an app that will pair people as buddies based on their interests and age. Buddy Project is a 501(c)(3) organization that supports mental health and recovery centers throughout the United States. Read more about the Buddy Project.

      Ace Ratcliff

Disability Rights Patient Leader

Facebook | Twitter

Ace’s advocacy is centered around intersectional feminism, with a specific focus on disability rights. She lives with hypermobile Ehlers-Danlos Syndrome, dysautonomia, and mast cell activation syndrome, which all make for a particularly rebellious meatcage. Ace writes about disability inclusion and representation. She has bylines at Huffington Post, SELF Magazine, Bustle, and Bitch Magazine. She has been featured in an Upworthy video, as well as at the Guardian and The Economist. She’s been featured on several podcasts, including Maximum Fun’s Reading Glasses and WNYC’s Note to Self. She’s also very active on Twitter! Check out Ace’s nominee profile. 

  Nicole Sigur

Cystic Fibrosis Patient Leader

Twitter

“I have two goals in life: don’t die from Cystic Fibrosis and make people laugh. So far, I’m 2 for 2. Spirit fingers. Random accomplishments include the publication of my first children’s book “Two Cents” – a percentage of the profits go toward the Cystic Fibrosis Foundation. Bachelor’s degree – graduated top of my class. Guest lecturer for Robert Wood Johnson Medical School. Full-time public relations professional. Children’s advocate. Self-proclaimed comedian. Noodle connoisseur. Can’t breathe. Probably needs to sit down. Stops to smell the 65 roses regardless.” Connect with Nicole.

    Erez Shek

Mental Health Patient Leader

Facebook | Twitter | Instagram

Erez created “The Shek Check” YouTube Channel after a Suicide attempt in 2016 that opened his eyes to so much. Living with Bipolar Disorder was not the only part of his Mental Health that needed to be cared for. “The Shek Check” explores the way we feel, think and behave (our Mental Health in totality), bringing awareness to its universal nature through sharing of lived experiences and humor, “The Shek Check” promotes the fact check that matters the most to our Mental Health, the one that starts within us. Normalizing the conversation so we can all start having those conversations, letting a little more light into ourselves. Learn more about the Shek Check. 

  Kerry Wong

Chronic Illness Patient Leader

Facebook | Twitter | Instagram

I’ve been living the chronic life for 10 years, with arthritis, fibromyalgia, sarcoidosis, & more. I aim to show others who are suffering that they are not alone, and to educate those who care but don’t understand how to be there for us in the ways we really need them to through my blog, Float Like a Buttahfly. I’ve fallen in love with advocacy, and do that as much as possible, whether by social media, phone, email, or in person at my legislators’ offices. I also help plan awareness events, and recruit & train newer advocates. This year, I hosted the first sarcoidosis event in my area (an accessible/inclusive “walk ‘n’ roll”), and I’m working to start a support group in the fall. Follow Kerry.

    Anna Evangeline | Six Hips

Juvenile Arthritis Patient Leader

Facebook | Twitter | Instagram

Anna is an athlete and advocate living with juvenile arthritis since age 11. Her blog “Six Hips and Counting” is named for the 6 hip replacement surgeries she’s had starting at age 14. Growing up and pursuing college, a career, relationships, etc. on top of managing her health has often left Anna feeling lonely and isolated from her healthy peers – to this day she shares with unflinching honesty what it’s like when the majority of one’s lived experience is through the lens of “being sick.” As a result, the cornerstone of Anna’s advocacy is ensuring that other young adult patients feel less alone and that there are healthcare solutions designed to meet their unique needs. Connect with Anna.

    Randy Patrick

MS Patient Leader

Facebook | Twitter | Instagram

“After being dx’d with MS in November 2012, I wanted to do my part in helping others who are diagnosed. Talking with others via social media helped me the most & helped me realize this disease was manageable. I created Must Stop MS! on Facebook as a place to provide support, raise awareness & provide news & information about Multiple Sclerosis. I ventured into the Twitter and Instagram shortly after. The MS Community is filled with amazing & supportive people & are the strongest people I know. I host #ChatMS every Monday at 7pm EST, which is a weekly chat dedicated to MS. #ChatMS is on Twitter, via a Facebook closed group, and now Instagram. It’s a great place to get support, learn, & share!” Learn more about Randy and #ChatMS.

    Therese Humphrey

RA Patient Leader

Facebook | Twitter

“Diagnosed with RA in 1986-age 26. I’m often disappointed by others who don’t realize the true impact of the systemic inflammation that comes with this disease! When people aren’t personally touched in some way, how could they really know. I lived in silence for too long. I decided to try Twitter in 2011, hoping to find others affected by RA and to spread awareness. It was then I finally found my voice! The most valuable aspect for me is that I have met thousands of truly inspirational people fighting the same battle and I became a strong patient advocate. I have overcome great challenges & continue to since diagnosed & I share my experiences in hoping to help others to never give up. Connect with Therese.

        Time to update who you follow! Scroll back to connect with these 10 talented tweeters and click below to share the inspiration with your own followers.

    Looking to engage more with your community on Twitter? Check out this #PatientLeader webinar for Twitter tips, strategies & ideas!

The post 2018 Top 10 Best in Show: Twitter appeared first on WEGO Health.

2018 Top 10 Best in Show: Twitter published first on https://drugaddictionsrehab.tumblr.com/

[edsenger]

2018 Top 10 Best in Show: Twitter

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  These Top 10 Best in Show: Twitter Patient Leaders manage to create easily digestible 280 character tweets to support, educate and encourage their communities. Whether they’ve created their own Twitter chat, participate actively in others’ chats, push out words of encouragement – they are the model of Twitter for #health

      Ashley Levinson Sells 

PCOS Patient Leader

Facebook | Twitter | Instagram

Ashley has served PCOS and chronic illness communities for over 18 years. She actively participates with multiple PCOS and health organizations to advance education and awareness for PCOS and chronic illness in social media and continues to advocate for PCOS and chronic illness through awareness events and legislative action in D.C.

Founder, #LemonFaceChallenge & #Heart4PCOS social media campaigns. 2006 Discovery Health Channel – Mystery Diagnosis Lobbying #HRes864 and #SRes336 in DC 2016 Ricardo Azziz PCOS Challenge Leadership Award PCOSC Magazine, copy editor PCOSC Patient Advisory Board Speaking 2 Heart Network, Advisor PCOS Petition with 20K supporters Connect with the 2018 WEGO Health Awards Best in Show: Twitter winner, Ashley. 

    Jeff Borghogg

Younger Onset Alzheimer’s Patient Leader

Facebook | Twitter | Instagram

“In March of 2016 at the age of 51 I was diagnosed with Younger Onset / Early-Stage Alzheimer’s Disease. Since my diagnosis, I have been working with great fervor with the National Alzheimer’s Association as a member of the National Early-Stage Advisory Group and a Early-Stage Ambassador with the Delaware Valley & Greater NJ Early-Stage Advisory Councils and an Alzheimer’s Congressional Team member. I advocate and create awareness for younger-onset Alzheimer’s daily via social media channels like Twitter, Facebook, LinkedIn, Instagram and Google+. “ Learn more about Jeff. 

    Buddy Project

Mental Health

Facebook | Twitter | Instagram

Buddy Project is a non-profit movement that aims to prevent suicide and self-harm by pairing people as buddies and raising awareness for mental health. Since April 8th, 2013, Buddy Project has been pairing teens and young adults with a buddy. We pair based on mutual interest and age. As of March 7th, 2018, over 211,000 people have signed up to be paired with a buddy. We are currently working on creating an app that will pair people as buddies based on their interests and age. Buddy Project is a 501(c)(3) organization that supports mental health and recovery centers throughout the United States. Read more about the Buddy Project.

      Ace Ratcliff

Disability Rights Patient Leader

Facebook | Twitter

Ace’s advocacy is centered around intersectional feminism, with a specific focus on disability rights. She lives with hypermobile Ehlers-Danlos Syndrome, dysautonomia, and mast cell activation syndrome, which all make for a particularly rebellious meatcage. Ace writes about disability inclusion and representation. She has bylines at Huffington Post, SELF Magazine, Bustle, and Bitch Magazine. She has been featured in an Upworthy video, as well as at the Guardian and The Economist. She’s been featured on several podcasts, including Maximum Fun’s Reading Glasses and WNYC’s Note to Self. She’s also very active on Twitter! Check out Ace’s nominee profile. 

  Nicole Sigur

Cystic Fibrosis Patient Leader

Twitter

“I have two goals in life: don’t die from Cystic Fibrosis and make people laugh. So far, I’m 2 for 2. Spirit fingers. Random accomplishments include the publication of my first children’s book “Two Cents” – a percentage of the profits go toward the Cystic Fibrosis Foundation. Bachelor’s degree – graduated top of my class. Guest lecturer for Robert Wood Johnson Medical School. Full-time public relations professional. Children’s advocate. Self-proclaimed comedian. Noodle connoisseur. Can’t breathe. Probably needs to sit down. Stops to smell the 65 roses regardless.” Connect with Nicole.

    Erez Shek

Mental Health Patient Leader

Facebook | Twitter | Instagram

Erez created “The Shek Check” YouTube Channel after a Suicide attempt in 2016 that opened his eyes to so much. Living with Bipolar Disorder was not the only part of his Mental Health that needed to be cared for. “The Shek Check” explores the way we feel, think and behave (our Mental Health in totality), bringing awareness to its universal nature through sharing of lived experiences and humor, “The Shek Check” promotes the fact check that matters the most to our Mental Health, the one that starts within us. Normalizing the conversation so we can all start having those conversations, letting a little more light into ourselves. Learn more about the Shek Check. 

  Kerry Wong

Chronic Illness Patient Leader

Facebook | Twitter | Instagram

I’ve been living the chronic life for 10 years, with arthritis, fibromyalgia, sarcoidosis, & more. I aim to show others who are suffering that they are not alone, and to educate those who care but don’t understand how to be there for us in the ways we really need them to through my blog, Float Like a Buttahfly. I’ve fallen in love with advocacy, and do that as much as possible, whether by social media, phone, email, or in person at my legislators’ offices. I also help plan awareness events, and recruit & train newer advocates. This year, I hosted the first sarcoidosis event in my area (an accessible/inclusive “walk ‘n’ roll”), and I’m working to start a support group in the fall. Follow Kerry.

    Anna Evangeline | Six Hips

Juvenile Arthritis Patient Leader

Facebook | Twitter | Instagram

Anna is an athlete and advocate living with juvenile arthritis since age 11. Her blog “Six Hips and Counting” is named for the 6 hip replacement surgeries she’s had starting at age 14. Growing up and pursuing college, a career, relationships, etc. on top of managing her health has often left Anna feeling lonely and isolated from her healthy peers – to this day she shares with unflinching honesty what it’s like when the majority of one’s lived experience is through the lens of “being sick.” As a result, the cornerstone of Anna’s advocacy is ensuring that other young adult patients feel less alone and that there are healthcare solutions designed to meet their unique needs. Connect with Anna.

    Randy Patrick

MS Patient Leader

Facebook | Twitter | Instagram

“After being dx’d with MS in November 2012, I wanted to do my part in helping others who are diagnosed. Talking with others via social media helped me the most & helped me realize this disease was manageable. I created Must Stop MS! on Facebook as a place to provide support, raise awareness & provide news & information about Multiple Sclerosis. I ventured into the Twitter and Instagram shortly after. The MS Community is filled with amazing & supportive people & are the strongest people I know. I host #ChatMS every Monday at 7pm EST, which is a weekly chat dedicated to MS. #ChatMS is on Twitter, via a Facebook closed group, and now Instagram. It’s a great place to get support, learn, & share!” Learn more about Randy and #ChatMS.

    Therese Humphrey

RA Patient Leader

Facebook | Twitter

“Diagnosed with RA in 1986-age 26. I’m often disappointed by others who don’t realize the true impact of the systemic inflammation that comes with this disease! When people aren’t personally touched in some way, how could they really know. I lived in silence for too long. I decided to try Twitter in 2011, hoping to find others affected by RA and to spread awareness. It was then I finally found my voice! The most valuable aspect for me is that I have met thousands of truly inspirational people fighting the same battle and I became a strong patient advocate. I have overcome great challenges & continue to since diagnosed & I share my experiences in hoping to help others to never give up. Connect with Therese.

        Time to update who you follow! Scroll back to connect with these 10 talented tweeters and click below to share the inspiration with your own followers.

    Looking to engage more with your community on Twitter? Check out this #PatientLeader webinar for Twitter tips, strategies & ideas!

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2018 Top 10 Best in Show: Twitter published first on https://brightendentalhouston.weebly.com/

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Exciting news! I’ve teamed up with Dysautonomia Advocacy Foundation to create some special comics! These are the first two I’ve done, all about diet, salt, and water. If you’d like some more info on these topics, I have a couple of Survival Guide comics that discuss them a bit more in-depth.

[The first image is a graphic that says, “Let’s talk...Diet! (And no, I don’t mean crazy things like seaweed infusions)” A sad looking stick-figure girl stands off to the side of more words: “Large meals send blood to your gut, often causing an increase in symptoms because less blood is getting to your brain, heart, and lungs. So, what can you do about it? 1. Eat smaller meals more often! 2. Elevate  your legs! 3. Tap your feet!”

The second image is a graphic that says, “Most dysautonomia patients need a lot of SALT and WATER in their diets. Check labels to see if a food is high in sodium. And be sure to talk to your doctor about your personal sodium needs!” A stick-figure girl says, “Remember! Salt and water work together in your body to help raise and stabilize your blood pressure. One without the other just won’t do!”]