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-   -   Cobb Syndrome (aka Spinal Arterivenous Metameric Disorder) (http://birthmark.org/board/showthread.php?t=6437)

deb-Cobb Syndrome 07-15-2013 10:42 PM

Cobb Syndrome (aka Spinal Arterivenous Metameric Disorder)
 
Hi everyone! I'm new to the forum (well, renewing an old membership) and wanted to share a new resource with everyone.

I have Cobb Syndrome (aka Spinal Arteriovenous Metameric Disorder) and have several rare spinal and brain tumors. In researching my disorder (for which a PWS on the back, particularly over the spine is an indicator), I found very little research about it. At the time I was diagnosed, there were less than 40 published cases in the medical literature. I was the first patient at the Mayo Clinic to be seen with Cobb Syndrome, and that generally holds to be true with every doctor I've seen.

If you know someone with Cobb Syndrome or who suspects they may have Cobb Syndrome, I'm working with the National Organization for Rare Disorders and Rare Diseases Europe to create an online support community for people with the disorder. Please feel free to email me directly (indianajane@outlook.com) or PM me if you're interested in joining the forum. We'd love to identify more people, especially if you're willing to share your story! I'm hoping it's not just me out here alone!

Thanks,

Deborah

missy 07-16-2013 01:01 PM

Hi Deborah and welcome (back)!

You are the FIRST I've heard about with Cobb Syndrome and I've been around here for 14 or 15 years now. I'm hoping it's not just you out there alone either, but I'm afraid you might be.

Other than PWS along the spine, what other indicators of the disorder are there? And how does it affect patients? And what is the prognosis?

If you start answering my questions, I'll come up with a lot more!

Anything we can do to help you along, please let VBF know.

Missy


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