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.
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!
