Saturday, October 26, 2013

National EB awareness week

It is National EB Awareness week. It's a week that always causes me to have a lot of mixed emotions, as I think about my kids' accomplishments with great pride, but also stop to think about all they have been deprived of because of this condition. I think about how I would give anything just to be a "soccer dad" whose kids' schedules were full with sports and activities and friends. EB is a very socially stigmatizing disorder. People stare. Other EB families have been asked to leave restaurants and other public areas. We once had a hair salon refuse to cut Cassie's hair. People just can't believe that the horrifying sores aren't contagious.

We live at a severe economic disadvantage because of the high costs of living with EB. Not just the bandages and ointments that aren't covered by insurance, but even the little things like needing to keep the AC at 70 year round because Cassie overheats from all the bandages.

EB has affected pretty much every aspect of our lives. It has a very similar affect on the lives of everyone who lives with it. There is currently no cure or treatment other than protecting the skin as much as possible through bandaging. The experimental bone marrow transplant is still years away from being a viable treatment. The only chance of medically improving the lives of those with EB is through research, and research takes money.

A few links to share for awareness week:

Cassie's Google Page by Sean Fannon

The Butterfly Fund -- Our Family's Favorite EB Charity

PUCK- Pioneering Unique Cures for Kids

Heal EB Foundation

Cassie's hands, or her "paws" as she calls them since her fingers are bound to her palms by scar tissue. This is called a "mitten deformity"
Post a Comment