Sneddon's Syndrome Questions & Answers - Diane O'Leary

Diane O'Leary ( ladybloobalot )

About me

I have Sneddon’s Syndrome and am the president of the fledgling US Sneddon’s Foundation.

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Katie B asked "

Do you have any sites you would recommend for getting more educated about this disease? I’m desperately seeking help and a diagnosis. I live in Alabama and have traveled to many cities and recently to Boston to Mass General. I feel like I’m going to die before they finally get it figured out. Would love any help. Thank you, Katie

"

Hello Katie – I’m so sorry I didn’t know this question was here! I’m not sure how this system works. Maybe I need to just check it periodically.

In any case, if we haven’t connected through the foundation yet, I would like very much to assist you in whatever ways I can. I should be able to direct you to doctors whose understanding of Sneddon’s works well with your symptoms and test results.

I have Sneddon’s too and know how terrifying it can be to feel yourself to be so seriously ill while your doctors are just waving you away. My own diagnosis took twelve years.

Please feel free to write to me either through the “Contact Us” link at the foundation website (www.sneddonsyndrome.org), or at my personal email, which is dianeoleary@earthlink.net.

Hang in there!

All the best to you and your family -
Diane