Living with Epidermolysis Bullosa
by Silvia C. & Brenda G.
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Marybeth and her daughter Samantha were recently featured on the Discovery Health Channel show called "Truth Be Told - I Have A Child With Special Needs".

You can follow Samantha Sheridan's Bone Marrow Transplant Journey if you go to
 
All you have to do is register with a user name and password; once you get that just go to  "visit a web site" and put in   samanthasheridan  just like that, all lower case, and all together as one word.
Sam's mom have been keeping a journal of their progress. 
 
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We Need Your Support! Sign the Wound Care Bill Petition NOW!!. CLICK HERE!

 Epidermolysis Bullosa (“EB”) is a group of inherited blistering diseases characteriz ed by recurring, painful blisters and open wounds due to the extremely fragile nature of skin and mucosa affected by this condition. EB may be dominant or recessive, and ranges in severity from mild to lethal depending on the type; it affects both sexes, and all ethnic and racial groups. One person in 227 has a defective gene that causes EB, and one live birth in 17,000 is an infant with some form of EB. It is believed that about 500,000 worldwide suffer from this disorder. There is no cure.

EBAN’s first and foremost goal is to improve the financial quality and emotional stability of EB families. We also wish to serve the EB community as legislative advocates, and revive imperative legislation – the Wound Care Bill. It is medically necessary for people with many forms of EB to bandage wounds and protect healthy skin from harm. Most of the time, these expenditures are not covered by insurance of any kind, and the  outlay for one household can range from $1-5,000 a month just for wound care supplies! There are families with children who need financial help now to cover the expense of costly bandages and medical supplies,  and young adults who need this assistance in order to achieve an independent lifestyle. Every American should be able to participate in impartial health care coverage, regardless of their disease.

The public and our legislators must understand the impact of this disease on EB patients and their families, and the inequity that subsists in today’s health care system. We dedicate ourselves to eliminating financial hardship experienced by the people of the EB community. 

EBAN will partner with the entire EB community and many other supporters to accomplish our goals. There is strength in numbers and we greatly value your alliance. Please visit this website regularly to hear more about our strategies and planned public awareness activities, and learn how you can help.  We respectfully request that you sign up at the How to Help link, and join us in fighting for the fair treatment of persons with Epidermolysis Bullosa. Your contact information will be kept entirely confidential.

We welcome your comments and greatly appreciate your endorsement! 

Why the Wound Care Bill is Crucial!


Silvia

My child has RDEB and his wounds cover anywhere between 30-60% of his body depending on the season and other factors. His body needs to be bandaged from head to toe not only to protect him from getting new wounds, but to protect his current wounds and allow them to heal properly. Bandage costs are outrageous and not covered by insurance. It costs anywhere between $1500-$1700 a month to keep my son alive, and bandaging is the only treatment this condition has. We need help!

Read More Testimonials Here...-->>>

News

August 2nd
If you are having issues with your insurance company paying for bandages......   
Read More...

February 5th
EBAN was invited to attend the 1st NIAMS National Coalition Day in Washington DC...  
Read More...

December 29th
Due to Marybeth's mother’s passing, and her daughter Samantha’s constant battle ... 
Read More...

November 22nd
Press Release: "Lou's Gift to EB" Golf Classic, an event to benefit EBAN! 
Read More...

October 25th
Help EB Patients today by helping us find a sponsor for the Wound Care Bill!!
Read More...

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 Epidermolysis Bullosa Action Network
16613 Milan De Avila, Tampa, Fl 33613
Telephone:1-813-325-1955
EBAN is a 501 (c) (3) non profit, tax exempt organization designated by the Internal Revenue Code