Ehlers-Danlos

[sassygirl8]

I am 41 yrs old and live in the Greater Cincinnati area.  I have recently started having a whole host of joint issues.  My shoulders are especially affected in that they are very loose in their sockets and constantly feel as if they are slipping out of place.  The same has started with my knees and hips.  In my teen years, I did have similar issues with my knees slipping in and out of socket. When adolescence was over, it gradually went away. Again, when I was pregnant, it happened in my jaw area. And now, with pre-menopausal symptoms, this has started more widespread.  
After reading many articles on everything under the sun, I realize that me and several family members have some very similar symptoms that are described as Ehlers-Danlos Syndrome.  I score 7 out of 9 on the Beighton Scale. One of the most severe of my issues, besides the joint issues is the redundant skin.  I underwent bariatric surgery 7 years ago and lost 180 lbs.  My skin has not recovered especially in the area of my thighs.  However, after reading about the skin conditions of Ehlers-Danlos, I have found that removing the excess skin thru cosmetic surgery, will only result in the eventual reappearance of the sagging skin and will risk severe scarring.  I have had my upper arms done (brachiaplasty) and it did scar very thick and has also begin to sag again. I still think it looks better than the rediculous amount of skin I had hanging off of my arms, but this brings me to my question.
Is there a way of finding a cosmetic surgeon that might specialize in preforming surgery on someone with Ehlers-Danlos and the possible complications?  I am desperate to get rid of this skin and have finally found a way to secure the money to do it.  I have an appt. with a Rheumotologist to find out about the possiblity of a definite diagnosis on the E.D. Syndrome. I am about 90 % sure I do have it and have passed the syndrome to one of my children.  But after I find out, I would like to address this skin issue and am seeking any information from you about the cosmetic surgery.  Any info you can offer would be much appreciated.

[sassygirl8]

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.

[sassygirl8]

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)

[DeannaRose]

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.

[Dr Santos]

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.