Madelung's
I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He does not use the internet.
His neck and upper torso are greatly affected.
He has not been successful, recently, in finding a doctor who can treat his problem.
He is ambulatory and able to travel, but would it would be helpful to find medical care within driving range.
He did have a somewhat successful surgery from a thoracic surgeon quite a few years ago.
Can you help me find a doctor, or the type of doctor who could help him?
Thanks for any replies.
Gina. Thanks very much for your reply. The thoracic surgeon that did help him previously has retired and moved out of the area. Good idea about calling the general surgery departments. I left Facebook, but can go back on to check out the support group. I really appreciate your reply, and will follow up here. I have Myasthenia Gravis, so have some understanding of how difficult it can be to find doctors. Regards, Dave
Hope it won't be long before he secures an appointment with a new provider who can help him. It is so very good of you to help him find his way.I see Health Union has a Myasthenia Gravis webpage and assume you have checked it out?
Wishing you well in your continued healthcare journey, Dave.
Gina
Hi there. Thank you for wanting to help your non-net using friend find an appropriate doctor that might be able to help him with this rare overgrowth disease. Unfortunately, we aren't a referral service for doctors, but I can try to brainstorm some ideas for you...
First thought is to ask him to call up the thoracic surgeon who helped him before. Even if that doctor isn't in the Pensacola area, he or she might have a referral name for your friend to connect with. Another thought is to call up general surgery departments at area hospitals to see if any of their docs are familiar with the benign condition and can see your friend for possible surgery. Lastly, I see there is a "Madelung's Disease Support Group" listed as being on Facebook. Perhaps you can join it as his friend and make a post there, too, on his behalf?
Best wishes to your friend in finding just the right provider.
He is lucky to have you help him out.
Fondly, Gina Miller
Team Member
