Thank you for comments.
Well B had her punch bioposy, internal stitches plus more steristrips on outside. Then a pressure bandage with a dressing on top.
They used a type of tape to keep the pressure bandage in place which is not suitable for anyone with thin skin issues. I had to remove the tape which caused bruising and cuts. I thought in the old days the community nurse would have come and changed dressing but these days one relies on mothers. It made me wonder what people do who live alone.
She bled and bled as us EDSer's are prone to do. The pressure bandage hurt.
She was brave.
Try telling a 19 year old, she is not allowed a bath for two weeks.
A photographer took photo's of the 'rash' but she only let him take them of the large area on her back. I totally understood. Nothing in his demeanor made her feel comfortable.
I think there is more but my brain is not working.
We waited patiently for results. She has had to keep returning at set intervals for extra blood tests and repeats of previous.
She thank god, does not have cancer, leukemia and they think not lupus, although the latter can be problematical to diagnose as it hides. Dermatologists can diagnose many things via the skin. But it seems not my daughter.
She remains a medical mystery. They are to have a team meeting to discuss her. The bioposy showed massive inflammation and necrosis. Which we are told is rare. The necrosis was a surprise to them as it is deep. They say.
They thought she had 'something' with the most incredibly long name. All things dermatological have incredibly long Latin names. But it was not that they don't think. Apparently tests can sometimes be negative when positive.
So we wait.
She is very tired. Very.
Her EDS pain is severe.
Relatives are pleased now it seems with the outcome.
For them I think that chapter is closed.
For us I feel its just beginning.
The dermatologist is kind. I felt she would rather have had a diagnosis because this wasn't your normal type of rash. It had them worried.
We see them again in a month.
B is vulnerable at the moment. We are endeavouring to surround her with love and support.
The crisis time has passed for the moment.
So once again we seem to have a 'rare' thing.
Except this rare thing has no name.
Me - perhaps I will write about in another post....
