Does anyone suffer with Ichyosis Bullosa of Siemens?

[ejwfish]

[Shell567]

Hi ejwfish,

I don't have your condition, but I do have a rare condition called Sweet's syndrome, so I know how difficult it is to find information and support.

It might be worth taking a look at the ISG's (Ichthyosis Support Group) associated Facebook site. You might have more luck finding someone else with your condition there.

facebook.com/pages/Ichthyos...

[Melmo]

Hi,

Both myself and my daughter have EHK Ichthyosis (aka Bullous Ichthyosis) I also run the group Friends of Ichthyosis and it is a very active group on facebook with a cosniderable number of members from all over the world and is continuing to grow. We have a couple of members with the same type as you have so feel free to join us if you wish, you are more than welcome. Or please feel free to contact me.