Epidermolysis Bullosa Simplex patient needs your advice

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Hi,

I am 30 years old, and have Epidermolysis Bullosa Simplex, which makes my skin very prone to having blisters. I have suffered from this disease pretty much all my life. Although mine is thankfully much milder than other forms of EB, it still requires me to pretty much plan my life around it. My blistering issue definitely gets much worse in hot weather.

Problem is that the two podiatrists I've been to really didn't have a clue -- and worse, were not interested in learning about the disease so they could come up with a good solution. Both made expensive custom insoles, but they didn't really work.

Worse, there is no good information available online -- just some unscientific material from people clearly peddling their own stuff.

Can someone please me give me some advice on any of the following:

1) what shoes to wear. I have tried Clarks, Ecco, Rockport, everything...I need some simple shoes for the office.

2) what insoles actually work. I had some success with the Lynco Aetrex, but the idiots made major changes, and now i can't find the older version any where.

3) what socks work. I've tried the smartwool, the double socks, but without success.

I have pretty good insurance, but need guidance on how to identify a great podiatrist who can help me. The physicians have no clue about this.

Looking forward to some guidance from you all!!

 

Hi,

You do not state your location, so it is difficult to point you in the right direction. However, you should be seeking advice from a podiatrist that has a special interest in Podiatric Dermatology. As with most health disciplines, there are special interest groups within the profession.

We would be remiss in our duty of care to offer any specific treatment or care without consultation, which is why the following information is highlighted in bold under the forum rules when you sign up for this forum;

I wish you well in finding the appropriate care soon.


Kind regards,
Bel

 

There is an association in the U.S. that focuses on research and support for people with EB. Their web site is: http://www.debra.org/. Although they focus on the more serious types of the condition, their resources are good for anyone with any type of EB. I am not sure what footwear they would recommend, but I know of at least a few people who have had success preventing blisters with Thorlos brand socks.