Tag Archives: epidermolysis bullosa

EB Awareness Week – October 25-31, 2016

ebawarenessweek_2016logoPretty ironic that EB (Epidermolysis bullosa) Awareness week begins today, October 25th (my birthday – the day I was born with EB 58 years ago)!

I’ve written about EB here on my blog in the past – giving you my story of what it’s like to have EB. (https://youempoweryourhealth.com/2015/10/28/epidermolysis-bullosa-week-october-25-october-31/) This year for EB Awareness Week 2016, I’d like to just focus on getting people aware of EB and how to help find a cure.

In today’s world of social media, there is not so much of a ‘taboo’ in talking about EB or just suffering alone with it. That’s the one thing I DO love about social media – there are so many ways to find support, find new friends, find answers to questions  you may have had and share with people just like you – no matter what the disease! I’m so thankful to the many new friends I’ve met who knows what it’s like to live with epidermolysis bullosa. (By the way – if any of my EB’ers want to share their story, ideas, etc. this week for EB Awareness Week, message me and I’d love to publish here on my blog).

debra of America (Dystrophic Epidermolysis Bullosa Research Association of America) in the United States is an organization dedicated to informing, teaching and increasing awareness for those suffering with this disease. There is also a debra International.

Show some love to these organizations and the different links to find out how you can participate in helping physicians, researchers, etc. find a cure for this incurable disease!

http://www.debra.org/epidermolysis-bullosa-awareness-week

http://www.debra-international.org/homepage.html

 

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Epidermolysis Bullosa Week – October 25 – October 31

EBWEEK The week of October 25 through October 31 each year is designated as epidermolysis bullosa week. This is a skin disorder that I will explain below as that disease is so near and dear to my heart because this is the skin disorder I was born with.

What is epidermolysis bullosa

Epidermolysis bullosa (ep-ih-dur-MOL-uh-sis buhl-LOE-sah)  or (EB) is a group of rare, connective tissue diseases, characterized by blistering of skin, butterfly-892350_1920manifesting extremely fragile skin. “Butterfly children” is the term often used to describe children, especially younger children with EB because the skin is as fragile as a butterfly’s wings.  EB is the result of the anchoring between the epidermis and the dermis, resulting in the tearing of the skin.  To learn more about EB, I will refer you to the DebRA of America (Dystrophic Epidermolysis Bullosa Research Association of America) organization  (or http://www.debra.org) for a more in-depth description regarding EB.

Causes of EB

Epidermolysis bullosa can be inherited, or caused by a genetic mutation.  With researchers identifying more than a dozen genes involved with skin formation, that if defective, may cause a type of epidermolysis bullosa.  There are varying subtypes of EB. The four types of genetically inherited EB:  Simplex, dystrophic, junctional and Kindler. Again I would refer you to DebRA of America (www.debra.org) for more in-depth look into EB.

Me and EB

I was diagnosed with EB at birth 57 years ago – can you believe there was even a diagnosis of that disease those many years ago? I have had my many challenges with it – even as an adult – I still suffer many symptoms, but I have learned many interesting things about EB along the way.  With the help of the DebRA of America organization since its inception in 1980, along with their many volunteers and workers and, of course the many concerned physicians who are still spending countless hours researching for a cure for EB, I have met a lot of great people along the way. DebRA continues to have an excellent support system in reaching out to those unfamiliar with EB, while also continuing to educate us who are living with EB. My blogging adventures began as I decided to tell my personal story of living with EB in 2013.   http://marshalivestotell.blogspot.com/

Check out the debra.org website and your local cities this week to see how you can become educated, donate, and get involved  in honor of Epidermolysis Bullosa Week!

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