Monday, April 7, 2008

"Walk a mile in their shoes"

For some this is easier said than done. Epidermolysis Bullosa (EB) is a rare skin disease which causes rapid blistering of the skin at varying degrees of severity. More mild forms of the disease cause painful blisters if an area of skin receives too much friction. Other, more severe, forms may cause severing scarring, or even the skin to fall off an affected area. The more severe form of the disease is at times fatal to infants.

Aside from painful, if EB is anything it is heartbreaking. A mother must resist cuddling her child for fear of causing blistering. A toddler's feet are wrapped in bandages for walking too many steps at the zoo. A girl crawls--hands and knees--to the bathroom because walking hurts to much.

So far no cure for the debilitating disease has been found. However, it is encouraging to see awareness being raised by those in visible positions.

Courteney Cox and her husband David Arquette have pledged to raise 1 million dollars in just two weeks to support EB research. "EB is very personal to me so I'm happy to be part of this $1 million challenge," she said. Cox is reaching out to other fellow celebrities such as Brad Pitt, Orlando Bloom, Jennifer Aniston, and Kate Beckinsale to garner support. Because the disease is rare, awareness is low as is funding for research. The former Friends co-star also said, "now is such an important time to put a spotlight on EB and ensure that research can continue at a fast pace."

It is encouraging and reassuring to see this rare disease getting some time in the spotlight. Knowing five people living with EB, I have personally witnessed the heartbreak that it can cause. This is something that can't be researched too fast.

So the next time you hear someone complain using the adage, "try walking a mile in my shoes," think of those EB patients out there. To "walk a mile" in the shoes of one of them would mean to give up the ability to walk for the next several days or possibly worse.

2 comments:

Anonymous said...

Hey Nathan!
You may have already seen this article but it was posted on march 31, so it is fairly new. I thought it was interesting and you and Heather might want to read it if you haven't already. http://abclocal.go.com/kabc/story?section=news/local&id=6053239

-Anna

Anonymous said...

Hi, Nathan! This is a very nice blog about a VERY important event! Your blog was sent to me a fellow Board member of the Dystrophic EB Research Association of Canada. I'm also on the Board of DebRA International, and am a close friend of everyone at EB Medical Research Foundation, who will benefit from Courteney and Ken's "givEBig" event. This has been a wonderful time for people with EB - we've been writing to Oprah for years, and Stanford's upcoming clinical trial really needed this financial support.

I want to also point out that there IS an event called "Walk a Mile in My Shoes" that celebrates our recently won legislation for "National EB Awareness Week" in the U.S. Similar legislation is being sought in Canada.

Please go to www.ebrelay.org to see what happened in 2007 with "Walk a Mile in My Shoes." We have even more exciting plans for 2008 - ANYONE will be able to captain a walk-a-thon and raise money during the last week of October under the "Walk a Mile" event for EB charities EBMRF, DebRA of America, dEBra Canada or DebRA Mexico. Please pass this on to whoever you wish!

My relation to EB? My Mom, Pat Barbrey, had the same recessive dystrophic form of EB that Rachel has (the girl shown with Ken Paves). My mother died in 2000 of an EB-related infection. People suffer their entire lives with EB, and we can ALL do something to help alleviate this, help them live their lives with better treatments. Because it's a rare genetic disease, it's tough to get the funding for the necessary scientific research to find a cure - but we can help. There will be further information after June 1 this year about our plans for 2008.

Best regards,
Gena Gruschovnik
gena@ebrelay.org
Walk a Mile in My Shoes
www.ebrelay.org
www.debracanada.org
www.debra.org
www.ebkids.org