#spooniechat

[chronicloaf]

Tickets to our Megan Thee Stallion themed #FridayThe13thFreakendParty Fundraiser #ForTinu are officially on sale fam!

All proceeds will go towards Tinu's chemotherapy costs!

https://www.eventbrite.com/e/chronicloaf-presents-the-fridaythe13thfreakendparty-tickets-1014848347727?aff=oddtdtcreator

[webauntie]

Spoonie Chat: 2-15-2023

@DawnMGibson founded the The Original #SpoonieChat back in the mists of time, when giant sloths rode unicorns over the tundra. Okay, so it was actually 2013, but that was awhile ago. She can be found hosting it most Wednesdays from 8-9:00 PM ET, on Twitter.

Click here to learn more about participating in Spoonie Chat. 

Click here to learn more about how to find Dawn away from the bird place. 

8:01PM 

Q1: Please share something about yourself. Disclosure of diagnosis or specific circumstances is NEVER required. #SpoonieChat

8:06 PM 

Q2: What's qualities or characteristics of  #disability and #ChronicIllness do outsiders struggle to understand? #SpoonieChat

8:13 PM 

Q3: What  helps our people understand/accept their ill/#disabled selves better? #SpoonieChat 

8:20 PM 

Q4: If you could go back to when thing started getting "serious" with your health/#disability what would you say to your younger self? What did YOU need to know? #SpoonieChat 

8:27 PM 

Q5: What tops 3 things could the people around us do to help us live better lives in acceptance of #disability and #ChronicIllness? #SpoonieChat

8:35 PM

Q6: What "moonshot" project to advance the acceptance of #disability and #ChronicIllness could your Spoonie Fairy Godmother do for you? #SpoonieChat

8:45 PM

Q7: It's time for Closing Thoughts, new topics, and Spoonie Fairy Godmother requests. #SpoonieChat #Disability #DisCo

[myalgicencephalomyelitiscfstom]

[mae-daej]

Good Morning Beautiful People!💚 Let's start today with some #90sNostalgia #Gargoyles is playing right now in the #ChronicLoaf stream https://s.kast.gg/g/2xtdjswwsm #FilmDis #cartoons #Disney #MMJ #CannabisCommunity #anime #medicalmarijuana #SpoonieChat #animation #sesh #Spoonies https://www.instagram.com/p/B1RzG2jlkBk/?igshid=10nl7yk4gos16

[littleholmes]

my rheumy wants me to do a sleep study and PT to help with my Fibromyalgia and hypermobility. I’ve been asking for other options because insurance won’t cover, but he wanted me to just see how much it would be. Guess who was right? It’s $600 for the study and $65 per session for PT. I can’t afford either, especially not when I owe $1000 for a CT Scan. Going to my next appointment will be like

[helens-journey]

Most start the week off with motivation, but I'm really enjoying starting off my week with a giggle 😂 as each weekend I post on the blog my 'CHRONIC ILLNESS JOKE OF THE WEEK' which can be enjoyed by sufferers & non-sufferers too, as they give everyone a humorous insight into living with chronic illness! 👍 So if like me you enjoy a good laugh, then why not pass by the blog LINK IN BIO & choose 'Chronic Illness Life' from the blog menu & there you will find each weeks jokes & posts 👌 • For motivation as well as a smile find my group on Facebook by searching: HELEN'S FIBROMYALGIA AWARENESS & CHRONIC ILLNESS SUPPORT GROUP • • • • • • • #HelensJourney #JokeOfTheDay #JokeOfTheWeek #LaughterMedicine #SharingASmile #ChronicInsta #SpooniesSisterhood #ChronicBlogs #BloggingInBed #ChronicallyInspiring #BloggingBed #discoverunder5k #accupuncture #Spoonies #SpoonieChat #SpoonieJoke #ChronicPainWarrior #ChronicPain #ChronicIllnessBlogger #ChronicPainAwareness #SpooniesUnite #AlternativeTherapies #ChronicallyAwesome #ChronicIllnessBlog #supportgroup #inspiremygram #SharingIsCaring #OnTheBlog #MyPerspective https://www.instagram.com/p/B1FHJQdB6Kf/?igshid=1o8mz5vb3w72t

[achronicvoice]

How many languages do you speak? Anything else you'd like to learn? ❤️⠀ .⠀ .⠀ .⠀ .⠀ .⠀ #chroniclife #chronicillness #chronicpain #spoonie #spoonieproblems #spoonielife #spooniechat #qna #qotd #language #languages #learning #education #fun #share #invisibleillness #selfawareness #selfimprovement #hobbies #spoonies #lupus #sjogrenssyndrome #antiphospholipidsyndrome #epilepsy #disability #wellbeing #mentalhealth

[grandmatapati]

Formerly known as Wish Upon A Blue Moon

I wasn't using Tumblr as often as other sites so I'd closed it but I want a place to reconnect with people if twitter goes down. There I am networked with #SpoonieChat and #NEISvoid plus #FatTwitter and various political discussions. I follow lots of history and Anthro accounts there too. It looks like it's going downhill fast with Elon in charge and acting out. Being older and chronically ill I wasn't, at first, looking for another social media site. I don't have energy to keep up with many. I've been on the internet since the early 90s and my first college Unix-based forum. I've gone through livejournal (still have mine) and have a dreamwidth account, a Facebook, a Wordpress blog, another blog I lost track of, a Myspace (too many blinking things) and ran my own Invision Power board forum which dwindled after Facebook sucked up a lot of the oxygen. I'm weary of starting over.

Being chronically ill with increasingly fragile health in the era of Covid, however, is socially isolating. So I want to be reachable in more than one place since people will spread out to different sites as twitter suffers inept and even malicious management.

[hcldr]

HCSM News

Thank you!!! #meded #hcldr #coronakindness #ourD #spooniechat #nnm #getmeppe #handwashing #benefitswithbailey https://t.co/zkEz46OScO

— Trey Bailey (@3xTrey) April 4, 2020

[jesseneufeld]

2018 Top 10 Patient Leader Heroes

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 are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community. 

  Kristal Kent

Fibromyalgia Patient Leader

Facebook | Instagram

“As an advocate chronicling my daily struggles with Fibromyalgia (FM), my goal is to promote Fibromyalgia Awareness, Education and Support online to unite the FM Community on Facebook. For many years my annual Fibromyalgia Awareness Campaign “POP and PUT ON PURPLE to Promote Fibromyalgia Awareness” has shed light on this Central Nervous System disorder, promote understanding, connect fellow Fibro Fighters from over 30 countries and validate Fibromyalgia as a tangible, medically defined Invisible Illness. I’ve recently established the “FOURTH FRIDAY FIBRO DAY” which is a Facebook Fibromyalgia Awareness event on the 4th Friday of each month. Kristal at The Fibromyalgia Pain Chronicles.” Connect with Kristal

Heather Von St James

Mesothelioma Patient Leader

Facebook | Twitter | Instagram

“I am a 12+ year survivor of mesothelioma, patient advocate, speaker and freelance writer/blogger. I began blogging about my journey when I realized that people needed hope when diagnosed with mesothelioma. I was given just 15 months to live upon my diagnosis, but have gone on to outlive their best case scenario. Advocacy is more than what I do, it is part of me. I speak for those who can’t and for those who have yet to be diagnosed. I believe until there is more awareness about mesothelioma, nothing will change. That is my mission, Awareness and advocacy are everything.” Follow Heather

Gustavo San Martin

Multiple Sclerosis Patient Leader

Facebook

“I was diagnosed with Multiple Sclerosis (MS) in 2011. The day I heard about the disease, my mother start researching about MS on Internet. The references she found were not positive! A few minutes later she came into my room, sobbing from crying, and asked: Son, are you going to die? From that day on I decided to work so that any other people would not come across the scenario that my mother found. Today, 4 years later, AME (the page I created to inform) is the largest association / platform of people with MS in Brazil.”

Gustavo is the winner of the 2017 WEGO Health Award for Best in Show: Facebook because the Facebook group he’s created for Brazilians living with MS is one of a kind! By sharing his story and his sincere passion for helping other patients, Gustavo has built a platform that supports thousands of patients daily. Learn more about Gustavo

Dawn Gibson

Chronic Illness Patient Leader

Facebook | Twitter

Dawn Gibson, best known as @DawnMGibson is a well known patient advocate and e-patient, writer, and patient experience consultant working in an advisory capacity with corporations, foundations, researchers, and other thought leaders to form an accurate and helpful understanding of chronic illness and disability. She is the founder and host of the Spoonie Chat Twitter and Facebook communities, regularly fields questions posted to Twitter and the #SpoonieChat tag between events, and works to connect patients with essential self-care concepts, appropriate advocacy organizations, and each other. Connect with Dawn

Candace Lerman

Rare Disease Patient Leader

Twitter | Instagram

“I am a rare disease patient who began advocating for others after researching and using an off-label chemotherapy treatment to put my blood disorder in remission. Thanks to my success with my treatment, I graduated from law school in 2.5 years, obtained my certification in Healthcare Compliance from Seton Hall Law School and passed the Florida Bar Exam. In addition to practicing law, I consult on pharmaceutical projects, advertising campaigns, political strategy and legislative initiatives. My unique experience allows me to address a variety of issues from a patient and professional perspective. I’m also working in translational research after the loss of my dog Kona Bear to canine glioma.”Follow Candace

Lara Bloom

Rare Disease Patient Leader

Facebook | Twitter | Instagram

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert. She is known for her documentary Issues with my Tissues about her attempts to walk the London Marathon. Click here to learn more about Laura’s journey

Deb Constien

RA Patient Leader

Facebook | Twitter | Instagram

“I’ve had Rheumatoid Arthritis for 35 of my 48yrs. Had a wrist fusion, knee replacement & 2 cervical neck fusions. My husband and son are my greatest support. I’m the Board Chair of the Arthritis Foundation & Advocacy Chair.  I regularly speak about advocacy. I am a 3x Platinum Ambassador winner from Arthritis Foundation and I’m also a representative for IFAA and the Leader of a Arthritis Support Network in Madison Wisconsin. I host monthly meetings in Madison. I also serve on the WREN advisory group & member of leadership board. I’m blessed to be able to do what I LOVE. Advocating for myself and others. Patient Council member for Creaky Joints. Research PCORI projects for ACP. Highly involved Volunteer.” Follow Deb

Terry Arnold

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

Terry Arnold was diagnosed with Triple Negative Inflammatory Breast Cancer, (TN IBC) in her right breast in August of 2007 after months of misdiagnosis. Also discovered her left breast had TN breast cancer as well. She realized this “orphaned form of breast cancer” was in dire need of research and educational funding. She formed the IBC Network Foundation in August of 2011, a 503c1 charity that she runs full time as a volunteer, to encourage education and fund research. The charity’s impact is now global as there is a sister charity in the UK as well. A milestone for education was realized with the development of an app available for a free download and is recommended by IBC specialists. Learn more about Terry and her foundation. 

Sue Jackson

Chronic Illness Patient Leader

Instagram | Twitter

“I have had the immune system disorder ME/CFS (known in the US as Chronic Fatigue Syndrome) since 2002, and both of my teen sons have had it since 2004. My older son also has Lyme disease plus two other tick infections. ME/CFS is a very debilitating illness with few effective treatments available; it requires serious lifestyle changes and activity restriction. I started writing my blog Learning to Live with CFS in 2006, and I cover topics ranging from research updates to treatments I have tried to dealing with the emotional impact of living with a chronic illness. I try to maintain a positive attitude and focus on joy and support. In addition, I started a local group in my community and surrounding states for families whose kids have ME/CFS and two online groups on Facebook, one for parents of kids who are sick and another for the teens and young adults themselves. Although my family has lived with some serious challenges these past 12 years, we are happy and try to find moments of joy in even the most difficult days.” Follow Sue.

Terri Wilder

ME Patient Leader

Facebook | Twitter

Terri was diagnosed with myalgic encephalomyelitis (ME) in March 2016. Since her diagnosis she has worked with elected officials, public health departments, health care providers, and activists to raise awareness about ME in New York State and across the globe. She volunteers for#MEAction and represents the group on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC). She has worked and/or volunteered in HIV services since 1989. She recently served on the New York Governor’s Task Force to End AIDS and was recognized by POZ magazine in 2017 for her work in HIV. Her articles on HIV can be found : www.thebody.com, www.thebodypro.com. ME webinars & work: www.meaction.ne Connect and Follow Teri.

A huge thank you to these tremendous Patient Leaders for proving true superheroes don’t always wear capes! Authentic but determined, these fierce leaders continue to inspire, teach and support their communities. It would be a mistake to not scroll back up and follow them all.

The post 2018 Top 10 Patient Leader Heroes appeared first on WEGO Health.

2018 Top 10 Patient Leader Heroes published first on https://drugaddictionsrehab.tumblr.com/

[lauramalchowblog]

2018 Top 10 Patient Leader Heroes

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 are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community. 

  Kristal Kent

Fibromyalgia Patient Leader

Facebook | Instagram

“As an advocate chronicling my daily struggles with Fibromyalgia (FM), my goal is to promote Fibromyalgia Awareness, Education and Support online to unite the FM Community on Facebook. For many years my annual Fibromyalgia Awareness Campaign “POP and PUT ON PURPLE to Promote Fibromyalgia Awareness” has shed light on this Central Nervous System disorder, promote understanding, connect fellow Fibro Fighters from over 30 countries and validate Fibromyalgia as a tangible, medically defined Invisible Illness. I’ve recently established the “FOURTH FRIDAY FIBRO DAY” which is a Facebook Fibromyalgia Awareness event on the 4th Friday of each month. Kristal at The Fibromyalgia Pain Chronicles.” Connect with Kristal

Heather Von St James

Mesothelioma Patient Leader

Facebook | Twitter | Instagram

“I am a 12+ year survivor of mesothelioma, patient advocate, speaker and freelance writer/blogger. I began blogging about my journey when I realized that people needed hope when diagnosed with mesothelioma. I was given just 15 months to live upon my diagnosis, but have gone on to outlive their best case scenario. Advocacy is more than what I do, it is part of me. I speak for those who can’t and for those who have yet to be diagnosed. I believe until there is more awareness about mesothelioma, nothing will change. That is my mission, Awareness and advocacy are everything.” Follow Heather

Gustavo San Martin

Multiple Sclerosis Patient Leader

Facebook

“I was diagnosed with Multiple Sclerosis (MS) in 2011. The day I heard about the disease, my mother start researching about MS on Internet. The references she found were not positive! A few minutes later she came into my room, sobbing from crying, and asked: Son, are you going to die? From that day on I decided to work so that any other people would not come across the scenario that my mother found. Today, 4 years later, AME (the page I created to inform) is the largest association / platform of people with MS in Brazil.”

Gustavo is the winner of the 2017 WEGO Health Award for Best in Show: Facebook because the Facebook group he’s created for Brazilians living with MS is one of a kind! By sharing his story and his sincere passion for helping other patients, Gustavo has built a platform that supports thousands of patients daily. Learn more about Gustavo

Dawn Gibson

Chronic Illness Patient Leader

Facebook | Twitter

Dawn Gibson, best known as @DawnMGibson is a well known patient advocate and e-patient, writer, and patient experience consultant working in an advisory capacity with corporations, foundations, researchers, and other thought leaders to form an accurate and helpful understanding of chronic illness and disability. She is the founder and host of the Spoonie Chat Twitter and Facebook communities, regularly fields questions posted to Twitter and the #SpoonieChat tag between events, and works to connect patients with essential self-care concepts, appropriate advocacy organizations, and each other. Connect with Dawn

Candace Lerman

Rare Disease Patient Leader

Twitter | Instagram

“I am a rare disease patient who began advocating for others after researching and using an off-label chemotherapy treatment to put my blood disorder in remission. Thanks to my success with my treatment, I graduated from law school in 2.5 years, obtained my certification in Healthcare Compliance from Seton Hall Law School and passed the Florida Bar Exam. In addition to practicing law, I consult on pharmaceutical projects, advertising campaigns, political strategy and legislative initiatives. My unique experience allows me to address a variety of issues from a patient and professional perspective. I’m also working in translational research after the loss of my dog Kona Bear to canine glioma.”Follow Candace

Lara Bloom

Rare Disease Patient Leader

Facebook | Twitter | Instagram

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert. She is known for her documentary Issues with my Tissues about her attempts to walk the London Marathon. Click here to learn more about Laura’s journey

Deb Constien

RA Patient Leader

Facebook | Twitter | Instagram

“I’ve had Rheumatoid Arthritis for 35 of my 48yrs. Had a wrist fusion, knee replacement & 2 cervical neck fusions. My husband and son are my greatest support. I’m the Board Chair of the Arthritis Foundation & Advocacy Chair.  I regularly speak about advocacy. I am a 3x Platinum Ambassador winner from Arthritis Foundation and I’m also a representative for IFAA and the Leader of a Arthritis Support Network in Madison Wisconsin. I host monthly meetings in Madison. I also serve on the WREN advisory group & member of leadership board. I’m blessed to be able to do what I LOVE. Advocating for myself and others. Patient Council member for Creaky Joints. Research PCORI projects for ACP. Highly involved Volunteer.” Follow Deb

Terry Arnold

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

Terry Arnold was diagnosed with Triple Negative Inflammatory Breast Cancer, (TN IBC) in her right breast in August of 2007 after months of misdiagnosis. Also discovered her left breast had TN breast cancer as well. She realized this “orphaned form of breast cancer” was in dire need of research and educational funding. She formed the IBC Network Foundation in August of 2011, a 503c1 charity that she runs full time as a volunteer, to encourage education and fund research. The charity’s impact is now global as there is a sister charity in the UK as well. A milestone for education was realized with the development of an app available for a free download and is recommended by IBC specialists. Learn more about Terry and her foundation. 

Sue Jackson

Chronic Illness Patient Leader

Instagram | Twitter

“I have had the immune system disorder ME/CFS (known in the US as Chronic Fatigue Syndrome) since 2002, and both of my teen sons have had it since 2004. My older son also has Lyme disease plus two other tick infections. ME/CFS is a very debilitating illness with few effective treatments available; it requires serious lifestyle changes and activity restriction. I started writing my blog Learning to Live with CFS in 2006, and I cover topics ranging from research updates to treatments I have tried to dealing with the emotional impact of living with a chronic illness. I try to maintain a positive attitude and focus on joy and support. In addition, I started a local group in my community and surrounding states for families whose kids have ME/CFS and two online groups on Facebook, one for parents of kids who are sick and another for the teens and young adults themselves. Although my family has lived with some serious challenges these past 12 years, we are happy and try to find moments of joy in even the most difficult days.” Follow Sue.

Terri Wilder

ME Patient Leader

Facebook | Twitter

Terri was diagnosed with myalgic encephalomyelitis (ME) in March 2016. Since her diagnosis she has worked with elected officials, public health departments, health care providers, and activists to raise awareness about ME in New York State and across the globe. She volunteers for#MEAction and represents the group on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC). She has worked and/or volunteered in HIV services since 1989. She recently served on the New York Governor’s Task Force to End AIDS and was recognized by POZ magazine in 2017 for her work in HIV. Her articles on HIV can be found : www.thebody.com, www.thebodypro.com. ME webinars & work: www.meaction.ne Connect and Follow Teri.

A huge thank you to these tremendous Patient Leaders for proving true superheroes don’t always wear capes! Authentic but determined, these fierce leaders continue to inspire, teach and support their communities. It would be a mistake to not scroll back up and follow them all.

The post 2018 Top 10 Patient Leader Heroes appeared first on WEGO Health.

2018 Top 10 Patient Leader Heroes published first on https://venabeahan.tumblr.com

[chronicloaf]

Are you Rewatching Gargoyles in anticipation of the the all the old and new series that are about to be poppin on #DisneyPlus??? Imma be ready! 📺🍿 #Repost @chronicloaf1 (@get_repost) ・・・ Join the #ChronicLoaf stream to watch #Gargoyles right now https://ift.tt/2H1ZcXJ #FilmDis #Disney #cartoons #animation #anime #cannabiscommunity #disability #spoonies #DisablednDatinChat #SpoonieChat #insomania #medicalmarijuana #DisabledDabber #Spoonies #MMJ #StarTrek #blerds #LateNightSesh #dabs #420friendly #cannabishelps #cannabispatient #cannabisconsultant #streaming #teamweed

[webauntie]

What: Navigating the Holidays, with #HealtheVoicesChat. 

When: Thursday, 11/21 @ 7PM ET.

Who: @HealtheVoices @shawnbethea_ @DawnMGibson

[myalgicencephalomyelitiscfstom]

https://twitter.com/DiaryofaSickGrl/status/1417204307833737233?s=20

[mae-daej]

Hola Beautiful People!💚 The new #DCSuperHeroGirls series is playing in the #ChronicLoaf stream https://s.kast.gg/g/ot1djswjt2 #FilmDis #chroniclife #Spoonies #MMJ #cannabisculture #sesh #Disability #DCComics #cannabiscommunity #SpoonieChat #cartoons #animation #gethigh #420friendly #cannabisconsultant #cannabishelps #stonergirls #cosplay #medicalmarijuana #DCUniverse #streaming https://www.instagram.com/p/B1hJF0sle9B/?igshid=20onlhft0hz

[edsenger]

2018 Top 10 Patient Leader Heroes

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 are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community. 

  Kristal Kent

Fibromyalgia Patient Leader

Facebook | Instagram

“As an advocate chronicling my daily struggles with Fibromyalgia (FM), my goal is to promote Fibromyalgia Awareness, Education and Support online to unite the FM Community on Facebook. For many years my annual Fibromyalgia Awareness Campaign “POP and PUT ON PURPLE to Promote Fibromyalgia Awareness” has shed light on this Central Nervous System disorder, promote understanding, connect fellow Fibro Fighters from over 30 countries and validate Fibromyalgia as a tangible, medically defined Invisible Illness. I’ve recently established the “FOURTH FRIDAY FIBRO DAY” which is a Facebook Fibromyalgia Awareness event on the 4th Friday of each month. Kristal at The Fibromyalgia Pain Chronicles.” Connect with Kristal

Heather Von St James

Mesothelioma Patient Leader

Facebook | Twitter | Instagram

“I am a 12+ year survivor of mesothelioma, patient advocate, speaker and freelance writer/blogger. I began blogging about my journey when I realized that people needed hope when diagnosed with mesothelioma. I was given just 15 months to live upon my diagnosis, but have gone on to outlive their best case scenario. Advocacy is more than what I do, it is part of me. I speak for those who can’t and for those who have yet to be diagnosed. I believe until there is more awareness about mesothelioma, nothing will change. That is my mission, Awareness and advocacy are everything.” Follow Heather

Gustavo San Martin

Multiple Sclerosis Patient Leader

Facebook

“I was diagnosed with Multiple Sclerosis (MS) in 2011. The day I heard about the disease, my mother start researching about MS on Internet. The references she found were not positive! A few minutes later she came into my room, sobbing from crying, and asked: Son, are you going to die? From that day on I decided to work so that any other people would not come across the scenario that my mother found. Today, 4 years later, AME (the page I created to inform) is the largest association / platform of people with MS in Brazil.”

Gustavo is the winner of the 2017 WEGO Health Award for Best in Show: Facebook because the Facebook group he’s created for Brazilians living with MS is one of a kind! By sharing his story and his sincere passion for helping other patients, Gustavo has built a platform that supports thousands of patients daily. Learn more about Gustavo

Dawn Gibson

Chronic Illness Patient Leader

Facebook | Twitter

Dawn Gibson, best known as @DawnMGibson is a well known patient advocate and e-patient, writer, and patient experience consultant working in an advisory capacity with corporations, foundations, researchers, and other thought leaders to form an accurate and helpful understanding of chronic illness and disability. She is the founder and host of the Spoonie Chat Twitter and Facebook communities, regularly fields questions posted to Twitter and the #SpoonieChat tag between events, and works to connect patients with essential self-care concepts, appropriate advocacy organizations, and each other. Connect with Dawn

Candace Lerman

Rare Disease Patient Leader

Twitter | Instagram

“I am a rare disease patient who began advocating for others after researching and using an off-label chemotherapy treatment to put my blood disorder in remission. Thanks to my success with my treatment, I graduated from law school in 2.5 years, obtained my certification in Healthcare Compliance from Seton Hall Law School and passed the Florida Bar Exam. In addition to practicing law, I consult on pharmaceutical projects, advertising campaigns, political strategy and legislative initiatives. My unique experience allows me to address a variety of issues from a patient and professional perspective. I’m also working in translational research after the loss of my dog Kona Bear to canine glioma.”Follow Candace

Lara Bloom

Rare Disease Patient Leader

Facebook | Twitter | Instagram

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert. She is known for her documentary Issues with my Tissues about her attempts to walk the London Marathon. Click here to learn more about Laura’s journey

Deb Constien

RA Patient Leader

Facebook | Twitter | Instagram

“I’ve had Rheumatoid Arthritis for 35 of my 48yrs. Had a wrist fusion, knee replacement & 2 cervical neck fusions. My husband and son are my greatest support. I’m the Board Chair of the Arthritis Foundation & Advocacy Chair.  I regularly speak about advocacy. I am a 3x Platinum Ambassador winner from Arthritis Foundation and I’m also a representative for IFAA and the Leader of a Arthritis Support Network in Madison Wisconsin. I host monthly meetings in Madison. I also serve on the WREN advisory group & member of leadership board. I’m blessed to be able to do what I LOVE. Advocating for myself and others. Patient Council member for Creaky Joints. Research PCORI projects for ACP. Highly involved Volunteer.” Follow Deb

Terry Arnold

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

Terry Arnold was diagnosed with Triple Negative Inflammatory Breast Cancer, (TN IBC) in her right breast in August of 2007 after months of misdiagnosis. Also discovered her left breast had TN breast cancer as well. She realized this “orphaned form of breast cancer” was in dire need of research and educational funding. She formed the IBC Network Foundation in August of 2011, a 503c1 charity that she runs full time as a volunteer, to encourage education and fund research. The charity’s impact is now global as there is a sister charity in the UK as well. A milestone for education was realized with the development of an app available for a free download and is recommended by IBC specialists. Learn more about Terry and her foundation. 

Sue Jackson

Chronic Illness Patient Leader

Instagram | Twitter

“I have had the immune system disorder ME/CFS (known in the US as Chronic Fatigue Syndrome) since 2002, and both of my teen sons have had it since 2004. My older son also has Lyme disease plus two other tick infections. ME/CFS is a very debilitating illness with few effective treatments available; it requires serious lifestyle changes and activity restriction. I started writing my blog Learning to Live with CFS in 2006, and I cover topics ranging from research updates to treatments I have tried to dealing with the emotional impact of living with a chronic illness. I try to maintain a positive attitude and focus on joy and support. In addition, I started a local group in my community and surrounding states for families whose kids have ME/CFS and two online groups on Facebook, one for parents of kids who are sick and another for the teens and young adults themselves. Although my family has lived with some serious challenges these past 12 years, we are happy and try to find moments of joy in even the most difficult days.” Follow Sue.

Terri Wilder

ME Patient Leader

Facebook | Twitter

Terri was diagnosed with myalgic encephalomyelitis (ME) in March 2016. Since her diagnosis she has worked with elected officials, public health departments, health care providers, and activists to raise awareness about ME in New York State and across the globe. She volunteers for#MEAction and represents the group on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC). She has worked and/or volunteered in HIV services since 1989. She recently served on the New York Governor’s Task Force to End AIDS and was recognized by POZ magazine in 2017 for her work in HIV. Her articles on HIV can be found : www.thebody.com, www.thebodypro.com. ME webinars & work: www.meaction.ne Connect and Follow Teri.

A huge thank you to these tremendous Patient Leaders for proving true superheroes don’t always wear capes! Authentic but determined, these fierce leaders continue to inspire, teach and support their communities. It would be a mistake to not scroll back up and follow them all.

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