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Board
Members:
Sue
Fulton
Steve
Henke
Steve Holbrook
Robin Holbrook
Karen Luke
Gail LaFayette
Joan Payzant
Carol Osterling
Pat Colligan
For
further information contact one of our Board of Directors at the
following
e-mail address: friends@wwfeb.org
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EB FACTS
• Epidermolysis Bullosa (EB) is really several inherited disorders
with one terrible symptom: the skin and mucous membranes of its
victims are so fragile that the slightest touch can cause severe
irritation and painful blistering.
• A life-long disease which is often present from birth, EB
causes drastic physical, emotional and financial hardships for people
who are born with
the disease and their families.
• Only 100,000 Americans, mostly children, are known to suffer
from EB.
• The most severe forms of EB involve permanent scarring that
can lead to general debilitation, cancer and premature death.
• Scarring EB is characterized by open sores and blisters
that heal slowly if at all. This continuous blistering leads to
scarring that causes disfigurement and immobilization of fingers,
toes, arms and legs, Blisters (which subsequently scar) form in
the mouth, esophagus, throat and stomach leading to infection, malnutrition
and anemia.
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EB NEEDS
• Provide direct financial assistance to families in need.
• Provide funding for gene research into both a treatment and cure.
• Provide camp scholarships for children with Epidermolysis Bullosa (EB).
• Provide opportunities for EB families to come together for support and special events.
• Provide scheduled times for people to help with preparation of bandages.
• Provide for medical supplies not covered by insurance. |
