#EBawareness

[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]

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

[fanfunwithdamianlewis]

Damian Lewis Fans! Wanna HELP the bravest girl Damian has ever known? Then please POP the balloons for Sohana and all butterfly kids out there & RAISE awareness for EB! Please READ and SHARE. Thank you

https://www.fanfunwithdamianlewis.com/?p=20825

[pavelberky-blog]

DEBRA ČR charity calendar 2018. ⠀⠀ Concept ERROR by Lin Kunčická - genetic defect/mutation - similar as epidermolysis bullosa that cause the skin to be very fragile and to blister easily.⠀⠀ •⠀⠀ Big thanks to everyone involved in this great and helping work - we are thrilled and grateful.⠀⠀ • ⠀⠀⠀⠀⠀ Burning skirt on great ballerina Zuzana ŠIMÁKOVÁ⠀ •⠀ Photo by @lucierobinsonphoto Make-up & hair: Filip NOVÁK ⠀⠀⠀⠀⠀⠀⠀⠀ • ⠀⠀⠀⠀⠀ @debraczech @jitkacvancar_official @lucierobinsonphoto @kuncickalin @filibaldos @brunerovo @fujifilmcz ⠀⠀⠀⠀⠀ • ⠀⠀⠀⠀⠀ #concept #design #photography #debracz #kalendar2018 #charity #epidermolysisbullosa #EBawareness #error #ballerina #art #instapic #burning #helpingothers #colour #help #charitycalendar #debracz #vsco #instadaily  #lucierobinson #helpinghand #fashion #paper #collage #debrainternational #ballet #berky #pavelberky (at Prague, Czech Republic)

[colinfahymusic]

Please text BUTTERFLY to 50300 to donate €4 to DEBRA @debraireland #pleasesupport #releaseyourbutterfly #debraireland #ebawareness www.debraireland.org

[twoheadeddogmusic]

Come the meet the whole f'n show!!!! #Repost @dabolitionderby ・・・ Come meet @therealrvd September 17th & 18th @dabolitionderby 2016 as @medicinal_mike and @bobbyblack420 present him with the @nugliferadio belt for his work in spreading the word about the safe use of #cannabis and all it has to offer. #wrestling #wwe #ecw #thc #420 #710 #fuckcancer #EBawareness #perris #hemet #california #inlandempire

[debraofamerica]

Community Spotlight: Lucy’s College Experience

Over the course of the past few weeks, debra of America asked five young adults with Epidermolysis Bullosa about their experiences attending college. Today’s Community Spotlight shines on Lucy, a 19-year-old student at the University of St. Andrews in Scotland. Read on for Lucy’s honest and inspiring responses to balancing care, a social life, and higher education.   

(pictured 3rd from right)

1. What made you decide to further your education and apply to colleges?  

I had always known it was something I wanted to do even as a child. I knew that my intellect and ability to learn were some of the only things EB couldn’t touch, and I decided to see how far that could take me.  

2. How did you choose a college? What were some factors involved your decision making?

I chose my college based on the ranking for my chosen subject and proximity to EB doctors. I was very lucky in that I got into my first-choice university. I loved the location and the overall atmosphere and that was important to my decision.

3. What are some things that you worried about when choosing a college? How did those things turn out?

I was terrified about making friends, going out, and dating! I was also scared of not being able to keep up with the workload; maybe everyone who had doubted me was correct and I was not cut out for higher education. Another thing that scared me was hall and roommate situations. While there were struggles, each and every one of my fears eventually became memories. I threw myself into my work and social life and took the opportunity to create a new identity for myself. 

4. What are some things your parents worried about in regards to you attending college? What was their reaction when you told them you wanted to attend?  

My mother was worried about me having a roommate and being in a different country and what that would mean for things such as health care and medication. She was also worried about how the intense schedule and workload may affect my health. These are still things we are still concerned about at times but have always handled it when they occurred. Sometimes it is difficult to get my medications, etc. but I am able to sort it out. She was very happy and supported my decision, she always knew that it was a goal of mine and constantly reminded me that my EB would not hold back my ability to learn.

5. How have you been able to balance college life and EB? What are some struggles you’ve encountered? Has your EB gotten worse or better?  

My EB is about the same, although with more issues with my eyes than usual. I am always tired though, which does not help how I feel. I am also still struggling with anemia, but my weight has improved! I have had to be smart about balancing college life and EB, and that has meant missing out on events that I wanted to attend, or swallowing my pride and requesting extensions on essays. I have encountered struggles with balancing selfcare, social life and work- I do have to remind myself I am here to learn and not to go to parties.  

6. Has college been harder or easier than you had expected?

Both- the work can be extremely challenging at times, but the social aspects are much better.  

(pictured 2nd from right)

7. What assistance/resources do you receive (if any)? And what steps did you take to ensure your needs were met?  

I need medication and dietary supplements as well as a handicap accessible bathroom (when in halls). I met with my doctors in London and the wonderful disabilities support team at my school to arrange these requirements and for the most part, everything has run smoothly with a few minor hiccups.

8. How was your freshman year like?  

It was amazing, fun, terrifying, sad, and rewarding. I was so scared and stressed, worried I was not cut out for college, worried I was not smart enough and that it was a mistake, but as I continued to push myself and saw what I could achieve, I began to develop self-confidence that now cannot be shaken. For that, I am so thankful.

9. Are your part of any campus clubs/sororities/frats/organizations? If so, what have your experiences been like? Have you been able to meet new people?

Yes, I am. I am a part of three societies/shows. I loved it all, my experiences were extremely positive and through those things, I have met many new friends. 

10. How have people at your college campus reacted to your EB?  Are they more accepting or do they ask more questions?

It is more of the same. Some people are quite accepting and do not notice my condition past the first ten minutes. Some others I meet or who see me say things that are hurtful and ignorant- I have learned this is the same almost everywhere. I am taking steps to further educate my school about disabilities in hopes this may begin to change for my campus.

11. What is your major and what do you plan to do with it?

I am majoring in History of Art and Anglo-Saxon. I plan to either work in an auction house selling art or in a museum. I would also love to maybe become a professor one day.

12. Do you have a fear of not obtaining a job after college due to your EB?

Yes and no. I am confident in my abilities, but I am apprehensive about working full-time due to my fatigue.

13. If you could give one piece of advice to others with EB who are either about to apply or are already in college, what would it be?  

No one and nothing, not even EB, can stop you from learning and growing as a person. Your ability to learn is an amazing thing that you can cultivate. Your insight is important and will benefit others. Throw yourself into everything: social activities and your studies. You can do it!

Thank you, Lucy, for sharing your story! Stay tuned for our final Community Spotlight: College Experience post next week. 

[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

[pavelberky-blog]

DEBRA ČR charity calendar 2018. ⠀⠀ Concept ERROR by Lin Kunčická - genetic defect/mutation - similar as epidermolysis bullosa that cause the skin to be very fragile and to blister easily.⠀⠀ •⠀⠀ Big thanks to everyone involved in this great and helping work - we are thrilled and grateful.⠀⠀ • ⠀⠀⠀⠀⠀ Burning skirt on great ballerina Zuzana ŠIMÁKOVÁ⠀ •⠀ Photo by @lucierobinsonphoto Make-up & hair: Filip NOVÁK ⠀⠀⠀⠀⠀⠀⠀⠀ • ⠀⠀⠀⠀⠀ @debraczech @jitkacvancar_official @lucierobinsonphoto @kuncickalin @filibaldos @brunerovo @fujifilmcz ⠀⠀⠀⠀⠀ • ⠀⠀⠀⠀⠀ #concept #design #photography #debracz #kalendar2018 #charity #epidermolysisbullosa #EBawareness #error #ballerina #art #instapic #burning #helpingothers #colour #help #charitycalendar #debracz #vsco #instadaily  #lucierobinson #helpinghand #fashion #paper #collage #debrainternational #ballet #berky #pavelberky

[eliseifferth]

"EB is painful but the itch is awful. You tear at skin until it shears but the itch won't stop," said Wendy Hilling Epidermolysis Bullosa(EB) - a condition that makes the SKIN FRAGILE. GENTLE touch contact causes BLISTERING, OPEN WOUNDS, and SORES. Please join me in supporting debra of America, an organization that is close to my heart and of which I am a Young Leadership Committee (YLC) member! Please follow their Instagram account at: @wefighteb. Together, we can spread much-needed #EBawareness P.S Donate Please https://www.debra.org/give Want to know more? www.debra.org and the free infographic http://fiendish.com/downloads/

[debraofamerica]

#EverydayEB: Ariana & Bianca

First legislated by Ronald Reagan and the U.S. Congress in 1984, National EB Awareness Week is recognized annually as October 25-31. It’s a week to increase awareness of EB, promote the need for treatments and a cure, and spur advocacy on behalf of the individuals and families affected by EB.

This year, debra of America is celebrating the diversity of our EB Community with a social media campaign titled #EverydayEB. From now through EB Awareness Week, we will be profiling community members with interviews accompanied by stunning portraits from award-winning photographer Ari Espay. These interviews will provide insight into the unique experiences of those individuals affected by EB and add a human dimension to the way others relate to their personal journeys.

Today, we’d like to introduce you to Ariana and Bianca.

18-year-old Ariana Covarrubias (pictured right) was debra of America’s 2015 Spirit Award Winner and is now our Fall 2018 Intern! She lives with Recessive Dystrophic EB.

ARIANA, PLEASE TELL US ABOUT YOUR EXPERIENCE SHOOTING WITH ARI.

I got my photo taken by Ari because I’ve seen his work before and I knew that he’d be able to reflect EB awareness through a photograph in a positive and powerful way. When I was getting photographed by Ari, I was actually in pain. During that time, I was dealing with a really bad wound on my foot that was recuperating from an infection and was still extremely painful. The reason why the pain is not “visible” through the image is because I want people to see me as someone who shows strength and smiles despite the daily suffering.

WHAT ARE SOME EVERYDAY CHALLENGES OR TRIUMPHS THAT YOU EXPERIENCE THAT MOST PEOPLE WOULD BE SURPRISED TO HEAR ABOUT DESPITE KNOWING THAT YOU HAVE EB?

I think as individuals, we all have our own daily challenges. For some, it may be getting to work every day, for others it may be facing their grouchy husband/spouse every day. My challenges are every day struggles that people would be shocked to know about. For example, things such as putting my hair in a ponytail, being able to eat without choking (amongst many other things) are routines that non-EB people can complete without a struggle. 

But just because I struggle it doesn’t mean that I don’t have triumphs. For people with EB, it is extremely hard to gain some sort of independence. Although I’m not where I want to be (yet), I’ve luckily been able to become independent. Another triumph in my life would the ability to touch hearts by showing my strength & abilities despite having a life-threatening illness.

WHAT DO YOU EXPERIENCE THAT OTHERS NEED TO KNOW ABOUT?

The things I experience that people should know about are endless. I wish people knew in depth the seriousness of my skin disorder. I wish people knew that I can & most probably will die because of this illness. And this is not because I want people to feel sad for me. Not at all. It’s more so because I want people to understand that EB is not “just a skin condition” (as I’ve been told plenty of times). It’s a chronic illness that affects my body from head to toe, literally. I also feel that people should know that individuals living with EB often feel isolated, left out, and discriminated even due to people’s misjudgments and ignorance. 

WHAT DO YOU WISH YOU DIDN’T HAVE TO EXPLAIN?

I wish I didn’t have to explain many things. I wish I didn’t have to explain my illness, period. But as I’ve grown, I’ve realized that the only & most efficient way to properly raise awareness is through explaining. But even then, there’s things I wish I didn’t have to explain like for example the reason behind me taking an hour to finish any meal or the reason why I don’t have any nails.

DO YOU HAVE A MESSAGE THAT YOU WOULD LIKE TO SEND TO THE EB COMMUNITY?

Dear EB Community,

I would like to first & foremost applaud you for all your strength and positivity that I’ve been able to personally gain from you all. I know today was probably another rough day where it was just awfully hard & painful to get out of bed due to maybe a bandage being stuck, or a really raw wound that just hurts without even moving or maybe because you know that you have to go through a long & painful dressing change later. Whatever the case may be, if you’re reading this now I know it’s because you were able to fight through. And my only message to you all is to always fight through. Always. 

Sincerely, 

A Fellow EB Warrior

16-year-old Bianca “Bee” Contreras (pictured left) also lives with Recessive Dystrophic EB.

HI BIANCA! WHAT ARE SOME EVERY DAY CHALLENGES OR TRIUMPHS THAT YOU EXPERIENCE THAT MOST PEOPLE WOULD BE SURPRISED TO HEAR ABOUT DESPITE KNOWING THAT YOU HAVE EB?

Every day, I have to do some type of care in order to maintain my skin. I do dressing changes which take an hour to an hour and a half, I drink supplements to maintain my weight, and I take medicine to make sure I have energy. I have an electric wheelchair that helps me get around, but I’m still capable of walking. I have one clubbed foot but I always load it up with extra padding, so I can walk better. Once in a while, I’ll get small blisters here and there due to being active throughout the day, but I’ll take 3 minutes to patch it up and continue on my daily life.

WHAT DO YOU EXPERIENCE THAT OTHERS NEED TO KNOW ABOUT?

My skin’s sensitive but it doesn’t stop me from being myself. I’m independent and capable of doing my own things. I don’t need a personal aide to help me, because I believe that I can do majority of things by myself.

WHAT DO YOU WISH YOU DIDN’T HAVE TO EXPLAIN?

I wish I wouldn’t have to explain how I’m not a burn victim. People mistake my wound for burns, and even comments like that drive me crazy. Know that I’m a bit different. It’s 100% not contagious, I’m safe to be around, and once you get to know me, you’ll realize I’m just a normal person, only a bit different.

DO YOU HAVE ANY MESSAGES FOR THE FOLLOWING GROUPS?

Researchers: Keep doing what you’re doing – find a cure or give us more options to improve our lives.

Doctors: Keep doing what you’re doing, you’re here not to cure us, but to help us become stronger.

General Public: We’re people like you. We’re no different than any average human, we still do everyday things.

EB Community: Just be you and don’t let anyone belittle you, you’re perfect the way you are.

Want to get involved this EB Awareness Week? Learn how at debra.org/EBweek!

[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