#EpidermolysisBullosa

[seira555]

世界中の誰かへ 【To someone in the world】/Junctional epidermolysisbullosa

[hcldr]

HCSM News

Please share and retweet. It'll reach the right person if it can get around! #epidermolysisbullosa #BCSM #MedEd #HCLDR #HITsm #hpm #LCSM #BTSM #hcsmSA #JACR #NephJC #ASEchoJC #SPSM #NurChat #KareoChat #EofL #Lyphoma #BTSM #pwme #ChildhoodCancer #hidradenitissuppurativa #AFib https://t.co/EsmaJ7Gstq https://t.co/QmGaCPwjjX

— That A_liyen from area M31 🐰亜梨矢🐰 (@A_liyen_M31) Apr 25, 2023

[adamkubert]

The other day I received an email from a friend of a friend who told me about the story of a courageous young man named John Hudson. John’s condition was described as a, “...terrible genetic disorder called epidermolysis bullosa. EB is a family of rare genetic disorders that affect the body's largest organ: the skin. Individuals with EB lack critical proteins that bind the skin's two layers together. Without these proteins, the skin tears apart, blisters, and shears off leading to severe pain, disfigurement, and wounds that may never heal.”. They said that John is a big superhero fan and they asked if there was something I could do for this special little boy. - There’s an organization called EB Research Partnership who is dedicated to finding a cure for John’s and others with this condition. From what I understand they are closing in on a cure. If you’re interested in learning more about EB or to make a donation I’ve put a link to the EB Research Fund in my bio ❤️ - - - - - - #epidermolysisbullosa #EB #johnhudson #Wolverine #MarvelComics #EBResearchPartnership https://www.instagram.com/p/CLg2QQYgRCo/?igshid=gm7lbw4jvpig

[daniellepioli]

@lucy_bealll ❤️ . @ebresearch . . #ebresearch #epidermolysisbullosa #epidermolisebolhosa #BeautyIsNotRare #healeb @olivia.vedder https://www.instagram.com/p/CM_PPHZAOjL/?igshid=1kejma3hw4ndt

[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.

[echevida]

△̵̵ Repost @charitydebra ・・・ We're delighted that @JaredLeto took some time to meet Christo, who has #EpidermolysisBullosa, whilst researching genetic skin conditions for his upcoming role! Jared said "Thank you Christo for sharing your journey with me and teaching me about EB. Your story as well as your love for life are truly inspiring" #FightEB #jaredleto . . . . . . . . . . #JaredLeto #30SecondsToMars #ThirtySecondsToMars #PROVEHITOINALTUM #Echelon #Rock #MARS #AlternativeRock (at London, United Kingdom) https://www.instagram.com/p/BvMliA2D9vq/?utm_source=ig_tumblr_share&igshid=116zpwqagdbxt

[abraralothman]

ولله الحمد اصدرت كتابي الثاني " EB نصفي الاخر " وتم توقيعه في جدة للكتاب ،

والكتاب يحكي عن معاناتي مع مرض انحلال الجلد الفقاعي ♥️🦋..

[kaseykourageous]

Stealing a kiss from heaven’s spokesperson. 💛🔆 // #IslaSloane maintains the most gentle + kind disposition. She’s always smiling + conversing in her own language, happy to hang out w/ her fans. My magical niece was born w/ #EpidermolysisBullosa (EB), a rare + painful skin condition that is not kind to those who have it. Yet Isla’s spirit glows even brighter, as she continues to shine in the face of such cruel + unfair adversity. I am her uncle + she is my hero. Astonishing little lightning bug. 🦋✨ #EBwarriors #CureEB

[servicedogforum]

October 25-31 is International #Epidermolysis #bullosa Week #Epidermolysisbullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters. Learn more at: https://www.nhs.uk/conditions/epidermolysis-bullosa/ https://www.instagram.com/p/CVd4b1LLliR/?utm_medium=tumblr

[daaconnections]

October 25-31 is International #Epidermolysis #bullosa Week #Epidermolysisbullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters. Learn more at: https://www.nhs.uk/conditions/epidermolysis-bullosa/ https://www.instagram.com/p/CVd4ZJ1P90-/?utm_medium=tumblr

[mitchell721]

Adam Levine of @maroon5 #maroon5 #adamlevine performing during the EB disease fundraiser hosted by #eddievedder #eddievedderofficial #pearljan #pearljamofficial #ebdisease #fundraiser #epidermolysisbullosa https://www.instagram.com/p/CH0MydULOUZ/?igshid=cd5p0u57wzqh

[seira555]

世界中の誰かへ 【To someone in the world】/Junctional epidermolysisbullosa

[revistaportfoliobrazil]

“Hoje, 03/11 tem Live super especial com a querida @mileidemihaile no próprio Instagram dela pessoal. A Live também contará com presenças muito especiais 🦋♥️ Será imperdível! Nosso encontro está marcado...contamos com a participação de todos vocês! Vamos juntos levantar esta bandeira, levando a conscientização e lutando por mais dignidade na vida de nossas grandes pequenas borboletas 🦋🦋🦋” @camili.vitoria.98871 @emperialle @chefchrisbrasileiro @rizziafroes @gutamackeldey #sosebkids #epidermolisebolhosa #epidermolysisbullosa #terceirosetor #voluntariado #fazerobem @mariaairesmedspa #mileidemihaile #revistaportfolio https://www.instagram.com/p/CHIZb3pneQH/?igshid=woykcx6qac6h

[tawanakwatson]

You don't want to miss this Podcast https://anchor.fm/mysisterkeeper/episodes/ENOUGH-IS-ENOUGH-ehv08s #needacure #roadythecat #anna #washyourhands #anythingcanhappen #rowan #epidermolysisbullosa #kickingass #whoooooo #biketouring #doitagain #dontquit #sometimes #ebsucks #thebigrideforeb #coronaviruspandemic #hopeisnotcanceled #coronavirusoutbreak #photooftheday #staypositive #art #f #follow #wirbleibenzuhause #isolation #repost #handsanitizer #community #photography #storedesign https://www.instagram.com/p/CDt-ptGgZ_r/?igshid=1lojvh1k0f2gz

[debraofamerica]

debra Impact Network Spotlight: Lindsay Martin

debra of America’s debra Impact Network is comprised of people directly affected by EB. Members include individuals with EB, or family members, who are passionate about bettering the lives of all those suffering from EB. Through education, advocacy, and outreach, Network members join debra of America in our mission to accelerate research and create real improvements for all those living with the disease.

The debra Impact Network Spotlight blog series features the amazing individuals who make up the Network. Today’s post shines a spotlight on new debra Impact Network member, Lindsay Martin, who lives with EB Simplex. Get to know Lindsay below!

1. Tell us a bit about yourself!

My name is Lindsay Martin and I have EB Simplex. I’m 25 years old and I live in Los Angeles, CA and I make a career as a Drummer! I was born in Burlington, Vermont and I’m a twin. My fraternal sister does not have EB. My family moved from VT to a farm in Upstate New York where I grew up. I grew up fishing, dirt-biking, off-road go-karts, 4-wheeling with ATVs. I played 2 varsity sports: softball and cross-country running.  

I was accepted into the University of Southern California (USC) Popular Music program as 1 of 25 accepted out of a pool of over 3,000 applicants. At the age of 19, I was cast on an episode of Glee! playing drums and I’ve never looked back! (Check out a clip from the show here.)

I am very active in the gym and super passionate about health and nutrition. I really look forward to having an opportunity to share my story and hopefully inspire others. My parents always encouraged me to do my best, go for it, adapt and overcome, find a way, fight through it… As a result of that, I did a lot of things in spite of having EB.

2. In what ways has your life been shaped by your EB?

It’s made me who I am today. I’ve become stronger and tougher mentally, and it’s taught me to never let something “different” hold me back or question myself. 

It’s taught me about courage and being you… and to never let something that isn’t considered “normal” by societal standards make me feel any different or less. Of course, I’ve had many times when I had blisters, small, big, scabbed over, infected, etc. all on my neck, arms, face, etc. They’re in places right where people can see them and never at a convenient time. But that’s who I am and it’s what makes me “Me”, period. I’ve realized that people love me for who I am as a person and not what I look like. 

Yes, I’ve had my times of asking myself, “Why me?”, but I believe that it’s because I can handle it. I have not, and will not, allow EB to define who I am or what I can do.

3. What are some challenges that you’ve faced and/or lessons that you’ve learned growing up with EB? How were you able to overcome those challenges?

Challenges:

I’ve been in severe pain (when I was younger) and I would be bandaged and wrapped head to toe. I’ve been picked on, bullied, and harassed. I’d have to sit out on events, activities, etc. because I would be in too much pain or just was afraid of getting hurt and seen with blisters on my body… But all that was then. My EB got better once I was around 13 or 14 years old. I started playing softball at age 7, piano at age 6, drums at age 9, riding a dirt bike at age 11. Yes, certain activities would cause blisters and it be super painful, but I never let it stop me because I absolutely loved doing what I was doing and was determined to never be held back by EB. 

Lessons: 

You’re given this disorder for a reason and the best way to make the situation easier is to accept and embrace it. Your differences and imperfections make you unique. 

How I overcame the challenges:

I learned to accept and embrace my EB. I’m going to be in pain, and I may have to simplify doing certain activities or sitting things out… and that’s OK! And just because I have blisters on my face or somewhere else where people can see… it’s OK! That’s what makes me ‘me’… unique and different!

4. Please tell us about your music and its impact on your life. When did you start to play the drums? What motivated you to stick with it? How was EB impacted your music and how has music impacted how you deal with your EB?

Music rescued me. Once I started playing drums, I knew no one could bother me or tease me. It became my true passion. Once I started getting really good, I noticed something: I was always me, EB or not. My skills at the drum set made people see me as they always did. Drums became my everything.

Like anything else, finding your passion is one thing. Being absorbed in it, obsessed, to want to make a living at it, meant hard work, devotion, pain, disappointment, and more and more practice which always means blisters. Soon, the blistering on my hands and feet became calloused. When I was younger, and I felt like I couldn’t speak, being my true authentic self, or communicate, drumming was my voice… It was a way to express myself without having to talk. And now, I love entertaining!

My dad introduced me to the drums when I was 9 years old and I knew since the first time I played that I wanted to do this for the rest of my life. Some of my favorite bands are Motley Crue, Led Zeppelin, Lana Del Rey, Cardi B, and more.

[I stuck with drumming because it] just gave me this feeling, rush, euphoria that nothing else in life could. In the beginning, drumming was the way I was able to communicate and express myself (I was very shy person) and it was a way to work through my pain from being bullied and confusion as to why I had this disorder, as well as to overcome my shyness. Now, it’s my love and obsession. I can’t imagine my life without it. And is literally my favorite thing in the entire world. 

[EB impacted my music because] my hands and feet are extremely calloused due to the amount of practicing and playing I do. I can’t scrub that stuff off because it provides me a layer of protection. There are also days when I physically cannot play just because it hurts so much. At night, I will put Vaseline all over my hands and put gloves on them because they hurt so bad and I need to have them absorb as much as that stuff as possible to ease the pain. 

[Music impacted my EB because music is] my voice. My everything. It gotten me through dark times and really has helped me accept myself and it has taught me that having EB is OK and it makes me, ME! It’s provided me with a sense of purpose. 

5.  What inspired you to help spread EB awareness (and join the debra Impact Network)? What do you hope to accomplish by teaching others about EB? 

The other day, I had a really bad outbreak on my face and neck and a lot of people were asking me about it. And at that moment, something inside of me just clicked. Epiphany, maybe? And I decided I wanted to speak and share my story. To share my story that it’s OK to have ‘something’ and to be perceived as ‘different’.  As I work on creating a name for myself in LA as a Drummer, I want to use the same type of platform and hopefully use my voice to spread EB awareness. For several years now, I’ve been a big advocate for females and drumming; that it’s not only for guys.

[By teaching others about EB,] I want to get the word out and inform others who don’t know about EB, and to educate and get more people involved. I’d like for more people to be aware of such an awful disease. I also want to have the opportunity to share my life and experiences with other EB folks or parents with kids that have EB. My parents let me play, fall down, get hurt, scuff my knees in the dirt. They never made me feel like I was different or wasn’t capable of doing something just because I had EB. And if I got cuts, blisters, etc., I just required little bit of extra care afterwards.

6.  What advice would you give to others, especially younger individuals, who struggle with EB?

Don’t let EB ever hold you back, discourage, or make you feel any different or less special. You are unique, beautiful, and special in your own way. Whether you have Simplex, Junctional, or Dystrophic, I believe EB is something we were all given for a reason. And I believe that in order to live your best life and to not let having this disease bring you down, you need to accept, embrace, and love yourself for who you truly are. Embrace the blisters. Continue to shine and let the world know who you are. We are the chosen few that have EB; because we are special. We can handle it. We can live a wonderful life in spite of EB.

Thank you, Lindsay, for sharing your story! You can catch Lindsay on MTV’s The Hills this summer. If you’d like to connect with Lindsay, you can find her on Facebook and Instagram or email programs@debra.org with your comments or questions for her!

To learn more about the debra Impact Network, please click here.

[fanfunwithdamianlewis]

Tomorrow is Rare Disease Day and it gives us a GREAT opportunity to help the bravest girl Damian Lewis has ever known. There are many ways to HELP Sohana Research Fund --- PICK ONE! 

http://www.fanfunwithdamianlewis.com/?p=24497