#WeFightEB

[debraofamerica]

Ask the Nurse: Vaccines

Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on Vaccines. Let’s get started!

Question: Is it safe to receive vaccines in EB and are there any precautions we should take?  

Answer: Vaccinations during childhood and adulthood provide important defense against serious illnesses.  Vaccines allow our body’s immune system to safely develop antibodies/immunity to diseases and reduce risk of these illnesses.  Routine vaccinations in EB may be given at the appropriate, scheduled times as directed by your physician. You or your child may experience a mild reaction to some vaccinations, which includes a slight fever (under 102 degrees F), soreness and/or redness at the injection site. These symptoms can typically last up to 1 to 2 days and should be discussed with your healthcare provider. When receiving a vaccine injection, remind your healthcare worker to gently dab the area with alcohol to avoid any friction from cleansing the site. The injection should be placed at the appropriate site where there is intact skin. Following the injection there should be no vigorous rubbing or massaging, just gentle pressure with an EB-safe dressing to cover the site.  

For more information regarding vaccines, please discuss with your healthcare provider. You can also refer to the CDC for more info on “Understanding How Vaccines Work” here.

Click here to watch Dr. Amy Paller’s video presentation on COVID-19 & EB on EBconnect.org.

To read more commonly asked questions, click here.

If you have an EB care-related question for our EB Nurse Educator, please email: nurse@debra.org or call toll-free at 866-DEBRA-76 (866-332-7276).

*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.

[jaquez2010-blog]

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A post shared by Melissa Jaquez (@melissa_2010)

The moment Marky asks @pswan33 if he can interview him:) and of course he said yes cuz thats just the amazing guy he is❤ watch the interview on Markys YouTube channel Markytherock Jaquez #wefighteb #markytherock #theworstdiseaseyouveneverheardof @wefighteb @causethewavetohealeb @ebmrf @ebresearch #joinhandsforeb #weneedacure #markythehero #specialneedsmom #specialbooksforspecialkids #fighteb #fighter #beinspired #memoriesareprecious #grateful #number3 #nascar #racingwives https://www.instagram.com/p/B2ALwFanKK_/?igshid=1x0lzna9ypxds

[bourbonsunday]

Tonight! One night only...again! I’m honored to be involved with this special event benefiting @wefighteb at the @capitoltheatre featuring an all-star lineup - @thewarrenhaynes @johnmedeski @georgeporterjr @joeyjoeyrusso @karldensonstinyuniverse - woah!! #gigposter #debraofamerica #thecap #warreneffinhaynes #joerusso #mmw #georgeporterjr #johnmedeski #karldenson #onenightonly https://www.instagram.com/p/B3zbcSjFWqW/?igshid=185ardan83po0

[jackjack84]

Never assume without solid proof. If you must assume, then I dare you to swap shoes with me and I'm not talking for just a mile. While one can learn a lot from a mile, we'll need 30 days for you to be able to get a mere taste of how my life spins and who I am. This journey I've been given is one hell of ride, no doubt about it, but you need to be prepared. I hope you have thick skin and steel balls sweetie because you're going to need 'em 🖤 #blog #writer #life #disability #eb #EBAwarenessWeek @wefighteb #eminem #quotes #wordpress @normancook

[threebuddiesadventure]

Approximately 600 babies will be born in the US with EB in the next 3 years. Researchers are working on treatments that could drastically improve the lives of these babies and the children and adults currently living with EB, but they need our support. Today is the last day of the 2016 EB Awareness Campaign but you can still do something small that will have a big impact. An anonymous donor will give $100,000 to research organizations to fight EB if DEBRA of America can get 600 people to donate to the cause before December 31, 2016. Donate as much or as little as you want, it's not about the amount raised just the number of donors. Always #WeFightEB #600Strong4EB #EBWeek

[divinevoicesmedia]

I am live at the debra 18th Annual Benefit and in honor of The National Eoidermolysis Bullosa (EB) Awareness Week (Oct 25-31, 2016) #wefighteb #curvymagazine #debra (at Gotham Hall)

[jaquez2010-blog]

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A post shared by Melissa Jaquez (@melissa_2010)

Loves from his human makes it all better #adventuresofmarkyandcephas #wefighteb #markytherock #theworstdiseaseyouveneverheardof @wefighteb @causethewavetohealeb @ebmrf #cureeb #weneedacure #markythehero #specialneedsmom #specialbooksforspecialkids #fighteb #fighter #beinspired #bullybreed #bullysofinstagram #bullyblessed #adventuresofmarkyandcephas https://www.instagram.com/p/B1oiFvuHyAc/?igshid=rlmkd1c57jpb

[jaquez2010-blog]

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A post shared by Melissa Jaquez (@melissa_2010)

Morning walks in the misty rain❤❤❤ beautiful morning to us! #wishewelivedinscotland #wefighteb #markytherock #theworstdiseaseyouveneverheardof #wefighteb #cureeb #theworstdiseaseyouveneverheardof #momofahero #fighteb #fighter #beinspired #bullybreed #bullysofinstagram #bullyblessed https://www.instagram.com/p/B1RcyEonBRH/?igshid=1ri0omajmtbvf

[debraofamerica]

Ask the Nurse: Hospital Tips

Each month, debra of America’s “Ask the Nurse” series will highlight a commonly asked question received by our Nurse Educator, Emily Griffith, BSN, RN. This month’s post focuses on Hospital Tips. Let’s get started!

Question: When I go to the hospital, the EKG stickers always cause blisters or pull my skin off. How can I avoid this from happening?

Answer: The adhesive portion of the EKG leads are not necessary for the leads to work; it is simply there to adhere to the skin. In EB, we need to modify the way the EKG leads adhere to the skin if they are necessary for your care. You can cut off, or sometimes peel off, the adhesive backing on the EKG sticker. If there is remaining adhesive that feels like this will cause trauma, press the sticker onto a blanket or sheet over and over to make the backing less adhesive. Next, place the EKG leads in the appropriate locations and secure in place with EB-friendly tape or bandages such as Mepitac, Mepiform, or another Mepilex product available.   Similar steps can be taken for the pulse oximeter such as cutting off the adhesive portion or pressing repeatedly against a blanket to remove adhesive. However, a pulse oximeter will read through some Mepilex products unlike the EKG leads. You can place Mepitac on the finger or toe first to protect the skin, then secure the pulse oximeter overtop the Mepitac so it is not directly touching the skin.

Click here for our Hospital Care Tip Sheet for more tips on EB precautions in the hospital setting and share with your healthcare providers.

To read more commonly asked questions, click here.

If you have an EB care-related question for our EB Nurse Educator, please email: nurse@debra.org or call toll-free at 866-DEBRA-76 (866-332-7276).

*The information provided herein is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, your child, or someone you know, suffer from conditions described herein, please see your healthcare provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision. 

[debraofamerica]

Spirit Award Spotlight: Zack Troop

debra of America is proud to honor Zack Troop with the Spirit Award at the 19th Annual debra of America Benefit being held on Thursday, October 26, 2017 at NYC Landmark, Guastavino’s. Zack is a 15-year-old honors student and student body officer from Bountiful, Utah who lives with Recessive Dystrophic Epidermolysis Bullosa (RDEB).

Out of 10 Spirit Award finalists, Zack was selected as the 2017 Spirit Award winner by debra of America’s EB Impact Committee. The debra of America Spirit Award winner is a person with EB in the U.S. who possesses great courage and strength in the face of EB.

One of Zack’s nominators shared, “Zack is a very thoughtful and ambitious kid. He is very hard working and doesn’t let EB get him down.”

We recently spoke to Zack about his life growing up with EB, his EB awareness efforts, and how he plans to spend his trip in the Big Apple! Check out our Q&A with him below.

PLEASE TELL US A LITTLE BIT ABOUT YOURSELF.

I'm 15 years old and live in Bountiful, Utah. I love hanging out with friends and gaming on my Xbox. I'm in 9th grade at Bountiful Junior High. I'm a student body officer and enjoy the interaction with all the students at school. 

WHAT WAS YOUR REACTION WHEN YOU FOUND OUT THAT YOU’VE BEEN SELECTED AS THE 2017 DEBRA OF AMERICA SPIRIT AWARD WINNER?

I'm super humbled by the chance to go to the debra Benefit. It seems pretty fancy and very different from what I'm used to doing.  

WHAT DO YOU PLAN ON DOING DURING YOUR VISIT TO NYC?

I can't wait to get to New York! I love riding the subway, eating lots of yummy food and seeing the sites. I can't wait to go to the Apple Store and maybe see a Broadway show.

WHAT ARE SOME OF YOUR HOBBIES?

In my free time, I enjoy biking. I have a really great group of friends and we spend a lot of time together on the weekends.

WHAT IS YOUR FAVORITE MOVIE? SCHOOL SUBJECT? BOOK?

My favorite class in school is Concert choir. I love the Harry Potter book series and my favorite movie is Spider-Man Homecoming.

WHAT ARE SOME WAYS THAT YOU SPREAD EB AWARENESS IN YOUR COMMUNITY?

I am currently writing a book for the Red Fred Project. I hope that it will help me spread even more EB awareness. This summer, I rode my bike in the Courage Classic in Colorado to raise EB awareness. I was the first person with EB to participate!

WHAT’S THE BEST PIECE OF ADVICE THAT YOU’VE RECEIVED?

The best advice I have ever been given was by the student body officer advisor. She said that as officers we need to be the example, not the exception. This is how I have always felt, but didn't know how to put it into words. Just because I have EB, it doesn't mean I can't be an example. I don't always need to look for a reason to be the exception and not participate, work hard or have the same consequences as everyone else.  

IF YOU COULD SEND THE ENTIRE EB COMMUNITY ONE MESSAGE, WHAT WOULD IT BE? I would love to tell the EB community that we need to dream big. We can set our goals high and find unique ways to achieve them. We need to be proud of our accomplishments. I really feel like we can do anything we want, but sometimes we need modifications and the people in our lives who love us can help us make those modifications.  

We are thrilled to be presenting Zack with the Spirit Award at our 19th Annual debra of America Benefit this Thursday, October 26!

[jaquez2010-blog]

I know it may seem as if I am always positive and upbeat and constantly happy but the reality is every night I wake up in a sweat not once but several times a night because I haven't heard marky call out for me so I literally hold my breath as I turn the handle on his door until I put my hand on his chest and feel it go up and down and only than do I let myself breath. And its repeated every morning.... this is the reality of having already loosing one child to this horrific disease... I have depression..its just not a depression that can be handled with medication.... special needs moms are a different breed... not by choice but by circumstance... I will never stop fighting for my child..... so when you see me smiling ...see me laughing...see me with all my positivity ..its because God has given me one more day with my child..one more day of loving him..one more day of memories forever imprinted on my heart and mind.... #wefighteb #markytherock #theworstdiseaseyouveneverheardof @wefighteb @causethewavetohealeb @ebmrf @ebresearch #joinhandsforeb #weneedacure #markythehero #specialneedsmom #specialbooksforspecialkids #fighteb #fighter #beinspired #memoriesareprecious #grateful #ebawareness #markystrong #markytherock https://www.instagram.com/p/B2y5048n0Ty/?igshid=9j6h8avvmukh

[jaquez2010-blog]

Excited to share the latest addition to my #etsy shop: Marky The Rock B3001 - Unisex French Terry Crew ! Fall is here y'all! show you're support and join the fight to find a cure! https://etsy.me/2kJ1MtI #wefighteb #markytherock #theworstdiseaseyouveneverheardof @wefighteb @causethewavetohealeb @ebmrf @ebresearch #joinhandsforeb #weneedacure #markythehero #specialneedsmom #specialbooksforspecialkids #ebawareness #markystrong #joinhandsforeb #weneedacure #brotherstrust https://www.instagram.com/p/B2y186UHbai/?igshid=5zoki567anop

[jaquez2010-blog]

@johnny_inspired this ones for you!!! The rino watching over his boy,!! #chargingrino #wefighteb #markytherock #theworstdiseaseyouveneverheardof #livingforJesus #beinspired #joy #choosejoy # #ebawareness https://www.instagram.com/p/B2typBtn6CU/?igshid=1hj3o3f296rvv

[jaquez2010-blog]

One of my favorite pictures of Marky and daddy @markthehammer1 ....Markys still layed up with torn corneas...which means days in bed in the dark with lubricant over the eyes for healing.... but all he's worried about is his brothers birthday and showing his dog in Oklahoma..... he never worries about himself always others.... my #superhero #wefighteb #markytherock #theworstdiseaseyouveneverheardof @wefighteb @causethewavetohealeb @ebmrf @ebresearch #joinhandsforeb #weneedacure #markythehero #specialneedsmom #specialbooksforspecialkids #fighteb #fighter #beinspired #bullybreed #bullysofinstagram #bullyblessed #adventuresofmarkyandcephas #abkcbullies https://www.instagram.com/p/B2o_2vSnux2/?igshid=yluawx4uwa54

[jaquez2010-blog]

I told Marky this morning..My love you are so amazing still smiling after waking up in so much pain from your scratched cornea..and said " Mamma at least I woke up".... #lovewhatmatters #wefighteb #markytherock #theworstdiseaseyouveneverheardof @wefighteb @causethewavetohealeb @ebmrf @ebresearch #joinhandsforeb #weneedacure #markythehero #specialneedsmom #specialbooksforspecialkids #fighteb #fighter #beinspired #ebawareness #markystrong #specialneedsmom #momofahero https://www.instagram.com/p/B2mTKLfn_QJ/?igshid=1bu2zfgthkigd

[jaquez2010-blog]

Caught Marky smiling at me while I was blasting my voice to praise music🤣🤣🤦‍♀️ #wefighteb #markytherock #theworstdiseaseyouveneverheardof #livingforJesus #beinspired #joy #choosejoy causethewavetohealeb @causethewavetohealeb @wefighteb #ebangel #cureeb #weneedacure #markythehero #specialneedsmom #specialbooksforspecialkids #fighteb #fighter #joinhandsforeb #ebawareness https://www.instagram.com/p/B2j2-aIHxK3/?igshid=8cbs2m4oifkb