Hi,
Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility, skin that stretches easily, and weakness of tissues. The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. Even with a cosmetic surgeon who will be able to do the present skin issue, this skin condition will still recur because of the nature of the disease. Vitamin C supplementation, exercising regularly, and having physical therapy to help strengthen muscles and joints may be helpful.
Definite diagnosis may be done through a skin biopsy. If found to be positive, discuss which type and the risks and benefits with your doctor. Take care and keep us posted.
I have Ehlers-Danlos Syndrome, I was diagnosed in March of '07 by a rhuemetologist in Oregon. From the research I've done and the responses I've gotten from my doctors, the known treatments for scarring and firming of collogen and production of collogen have been unsuccessful for EDS patients. I have severe scarring on my outer thigh on my right leg, and slightly less severe on my face and arms and stomach. The dermatologist I saw, which had heard of and treated EDS patients, said that there was nothing that could be done. In regards to surgeries, the only information and experiences i've heard, is that surgeries result in faulty healing and things like skin tearing and sutures not keeping stable in our crappy skin. It would make sense that the skin would just re-stretch :(.
My suggestion would be to get a group of doctors and specialists and PT/OT doctors, if you can, even if its just a few, or one or two, thatcan help you manage your symptoms and do research of their own and find what treatments may help you. Its very hard finding doctors to not only know what the condition is (we often end up becoming the guinea pigs of hospitals, they bring in the students or other docs or nurses to come see how far we stretch and talk about our symptoms and stretch our skin out....which isnt always bad, teaching them is good, but we feel like freakshows......gah) but also who are open minded to the many different paths of treatment that EDS patients might need. I've gotten doctors that will protest my diagnosis, prescribe my family with meds that even say on the bottle "do not take if you have a connective tissue disorder", deny me meds, deny me treatment, disrespect me, SO go find the really good doctors that know how to listen and are flexible when things start to not work and you need other options! I hate it when doctors blame you for their treatment not working, and get frustrated to the point of refusing to treat you after that. ANYWAY.
Good luck to you and your family, EDS comes on different for every person, from mild to severe and i hope no one gets the awful pain associated with the condition, i really do.
i hope you can find a doctor that can find a solution!
also, look in to natural suppliments? theres different amino acids that are supposed to help collagen production and I've heard good things about them. and turmeric for nerve pain, inflamation, a few other things. JUST some options :) I know it doesnt help the skin issue...I'm still searching for answers in that area as well.
Thanks for all the info. Sounds like pretty much what I thought; in that I will just have to deal with the scars and hope they are not as bad as the current skin redundancy. Its pretty discouraging after all the weight loss, but I guess I just wasnt meant to be "happy in my own skin". ;0)
Thanks for the information also. I wish it were a little more encouraging, but facts are facts.
I will keep you informed on what happens.