does anyone have a child with EB?

[ShowYourSeams]

Not sure this is the right place to post, but I was wondering if anyone else has a child with EB?

Our 4 week old twins were diagnosed with EB shortly after birth and I'm really struggling to come to terms with it.

We are still awaiting biopsy and genetic test results to find out which type they have but due to the fact that neither myself or DH have it, it looks like they will have Recessive Dystrophic EB or Junctional EB.

It would be great to chat to anyone who has any experience of can help me through this waiting period.

Email, Debra.org.UK
They are an EB organisation, if you haven't heard of them.
Good luck with your twins, it's jolly hard work without throwing in EB as well.

Website not email for Debra.org.UK
Also try website contact a family
My niece had really bad eczema, ended up being treated at great ormond street hospital.
Luckily some of our family lived close enough to help out each day, ironing, housework or what ever help they needed.
Hopefully you have close family or friends who can help out.
Hopefully the hospital will be able to assist you with any questions you have.
This is the best place to post, especially when you are feeling lost.
In less than 2 weeks my niece will be 18, eczema under control.