EDS Ehlers Danlos Syndrone

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EDS Ehlers Danlos Syndrone

Postby mom2sonja&max » Mon Feb 20, 2012 1:36 pm

Hi there folks,
It's been a long time since I've posted to the forums here but I was wondering if any of you have any information on where there is a medical practice that specializes in EDS on the north east coast. A friend of mine and I are looking for a practice somewhere near northern New york. I know that this forum deals with mostly Sm and CM but many people have a dual diagnosis of EDS.

ANY information would be greatly appreciated!!!!!
Mom to two beautiful babies adopted from China
Wife to great husband and father
tonsillar herniation 8.6 mm,DDD, Herniations C,T&L spine, Hemangioma T4 1cm, Fracture to T12,?OTC,brainstem in C spine
http://www.littlebrothermax.blogspot.com
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Re: EDS Ehlers Danlos Syndrone

Postby hegnauea » Tue Feb 21, 2012 3:43 pm

http://www.gbmc.org/body.cfm?id=67

Dr Francomano is the top person in the country from what I understand. I went to see her in September - she was great. (I have an unidentifiable connective tissue disorder - can't be boxed in by a name haha)

Ab
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Re: EDS Ehlers Danlos Syndrone

Postby DEN » Wed May 30, 2012 1:10 pm

Depends on the type of EDS.

I agree, Dr. Francomano is a very good physician. She sends many of her patients to our testing lab (rule out EDS IV). EDS IV is the lethal form and can overlap in presentation as hypermobile EDS. Any family history of aneurysms/dissections?

If you have hypermobile EDS (type I or type III), then you are evaluated clinically. Although, I believe COL5A1 is a gene they test diagnostically. Not sure if it is the only one associated with hypermobile EDS. I can look into it and update this posting.
Supporter of a loved one with SM.
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Re: EDS Ehlers Danlos Syndrone

Postby lttutrow » Mon Jun 04, 2012 10:32 pm

Dr. Francomano is who we saw too. Mine were diagnosed with classic type.
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Re: EDS Ehlers Danlos Syndrone

Postby passmass » Wed Jun 13, 2012 2:03 am

If Dr. Francomano does not work out, I was diagnoised at TCI. I highly recommend them to anyone who needs tethered cord surgery!! They put all of my symptons together!! Elhers Danlos, Tethered Cord, Syringomyelia, Chiari 0, Chronic Pain syndrone, Fibromyelia... I had a fusion of C5-6 in Memphis, Tn in 2004. TCI diagnoised me with EDS,TC, SM, Chiari in 2006. I had tethered cord surgery in 2007. Over the course of the next 1 1/2 years I lost alot of symptons. Surgery was very sucessful.
I am doing the paper work to go back to TCI now.
Thanks and Good Luck Passmass
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
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