#EpidermolysisBullosa

[drharorsswellnesss]

Epidermolysis bullosa (EB) is a rare genetic disorder that causes fragile skin, leading to blisters and sores from minor friction or trauma. It can affect any part of the body, and its severity varies widely. There are different types of EB, each with distinct characteristics and genetic causes. Here are some key points about EB: 1. Types: The main types include EB simplex, junctional EB, and dystrophic EB, each affecting different layers of the skin. 2. Symptoms: Common symptoms include blistering, sensitivity to touch, and skin peeling. Some forms also affect internal organs and can lead to complications. 3. Causes: EB is caused by mutations in genes responsible for producing proteins that help anchor the skin layers together. 4. Management: There is no cure for EB, but treatment focuses on wound care, pain management, and preventing infections. Supportive therapies and counseling can also help improve quality of life. 5. Awareness: Raising awareness about EB is crucial for fostering understanding and support for those affected. Advocacy groups work to provide resources, support, and research funding.

👉Why Choose Haror’s Wellness: ✔️ Holistic Approach ✔️ Targeted Treatments ✔️ Over 15 Years of Expertise ✔️ Trusted by 100,000+ Satisfied Clients ✔️ Premium Care, Affordable Treatments ✔️ Advanced Treatments with State-of-the-Art Technology

Call 📞 +91 96378 66666 to schedule your appointment

https://drharorswellness.com/book-appointment/

[drharorswellness]

Epidermolysis bullosa (EB) is a rare genetic disorder that causes fragile skin, leading to blisters and sores from minor friction or trauma. It can affect any part of the body, and its severity varies widely. There are different types of EB, each with distinct characteristics and genetic causes.

Here are some key points about EB:

Types: The main types include EB simplex, junctional EB, and dystrophic EB, each affecting different layers of the skin.

Symptoms: Common symptoms include blistering, sensitivity to touch, and skin peeling. Some forms also affect internal organs and can lead to complications.

Causes: EB is caused by mutations in genes responsible for producing proteins that help anchor the skin layers together.

Management: There is no cure for EB, but treatment focuses on wound care, pain management, and preventing infections. Supportive therapies and counseling can also help improve quality of life.

Awareness: Raising awareness about EB is crucial for fostering understanding and support for those affected. Advocacy groups work to provide resources, support, and research funding.

👉Why Choose Haror’s Wellness: ✔️ Holistic Approach ✔️ Targeted Treatments ✔️ Over 15 Years of Expertise ✔️ Trusted by 100,000+ Satisfied Clients ✔️ Premium Care, Affordable Treatments ✔️ Advanced Treatments with State-of-the-Art Technology

Call 📞 +91 96378 66666 to schedule your appointment

https://drharorswellness.com/book-appointment/

[maximumwobblerbanditdonut]

Colin Farrell has completed a marathon with his close friend Emma Fogarty, hailing her for demonstrating "what courage is all about".

The Hollywood star ran the Irish Life Dublin Marathon for Miss Fogarty, who is Ireland's longest survivor with the genetic condition Epidermolysis Bullosa** (EB).

"I have known Emma for many years and she epitomises bravery, she is what courage and pure determination are all about," said Farrell in a statement afterwards.

**Epidermolysis bullosa (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.

📹 by Sarah Burns

#Colin Farrell #EmmaFogarty #dublinmarathon #@irish_examiner #irishtimesnews #Ireland 🇮🇪#EpidermolysisBullosa #Dublin #Irishlife

Posted 28th October 2024

[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