Category Archives: Hints & Tips

Every EB patient is different… no, really!

0 Comment

When my son was born and later diagnosed with Recessive Dystrophic EB I thought the only difference with him and the other patients was the degree of severity. Actually, I take that back. I did not know there was a degree of severity either, I thought that, like most diagnoses I had known in the…

Read More

How to find Individual State Programs

0 Comment

These programs help low-income families (usually) or/and children with special needs. When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services. If the NAME of the State Program and information it is known, that information will be below the…

Read More

Fecal Hoarding and Constipation

0 Comment

Written by an Anonymous RDEB Patient I have had these issues since birth and have tried a myriad of medications that have been prescribed or suggested by prior physicians. The list includes mineral oil, senna products (liquid and herbal tea) ex-lax, milk of magnesia, dulcolax, docusate sodium, Metamucil, Miralax, Benefiber and many others that I…

Read More

Caregiver Poll Results

0 Comment

Around 2004/2005 a poll was posted on this website to ask various questions such as where they get bandages, if they have help etcetera. Here are the results of that survey. The vast majority of people that have answered the survey stated that one of the parents is home full time and does all the…

Read More

Helping Kids Cope

0 Comment

CLICK HERE for the Spanish version Epidermolysis Bullosa, EB, is a very difficult condition to live with, even with the mildest forms. These are things of outmost importance in helping your child coping with EB: ¬†Accept the EB and accept your child for who he is. This sounds simple, but it’s not. There is a…

Read More