There is nothing that can bring a family together like a serious illness or
injury. What an aweful thing to live with. Sure hope they can find a way to stop
the onset of this disease.
There is no information here about a fund to help those afflicted. Does anyone
This is the problem of medicine for profit. Many rare but serious medical
conditions are ignored or back-burnered because the drug companies won't make
any money off of creating a cure. It is also why we can treat diseases like
Alzheimer's, Parkinson's, MS and diabetes but not cure them... the drug
companies are making too much money from keeping people strung out on pills and
shots for the rest of their lives.We have the technology, there are
dedicated scientists willing to put their minds to the task, but corporate greed
steps in and shuts it all down.
My heart goes out to the people who suffer from this disease, I also admire them
for their courage to live with that day after day.
I have seen several cases of this over the years, although I am more familiar
with the term bullous pemphigoid to describe this. It is an autoimmune disorder
that causes blisters over the body that are tissue thin. One thing I have
noticed with taking care of these people is that often a medication is suspected
as being the cause of the immune system malfunction, especially dilantin. Of
course, this is very rare reaction, so don't change meds based on a comment, as
I can only remember 4 or 5 cases over the years.