Sneddons Syndrome

[strawberry69]

Hi, I'm seronegative APS and I saw my Neurologist yesterday who has confirmed that I have Sneddons Syndrome. Although I'm anxious, frightened and lots of other emotions I'm not really surprised. I've read on the Internet on the Rare Diseases page and found it quite useful but I was wondering if there were any books on the subject which will be easy for me to understand. Thank you

[MaryF Administrator]

Hi there, start with this: ojrd.biomedcentral.com/arti... Also this is available on a well known on line shopping option beginning with 'A' make sure you get the version in English! Sneddon's Syndrome: Livedoid Vasculitis, Hypertension, Hepatitis C, Antiphospholipid Antibodies

MaryF

[strawberry69 in reply to MaryF]

Thanks Mary x

[daisyd]

Hi thanks Mary I have sneddons syndrome to which the Doctors now call it cerebral APS

Scary but with Warfarin and INR target around 3.5 and Hydroxychloroquine 400mgs daily also antidepressants, I have improved a lot, I am seen at St Thomas to a haematologist and Guys to see a brilliant Neurolist who arranges to see me and have MRI scan and actually believes Hughes syndrome actually exists.

Hope you start to feel better soon Strawberry 69, better to have a diagnosis and have the correct treatment.

[Elaine77c]

Hi, when I asked Dr D'Cruz about Sneddons as I had had a stroke and all my symptoms seems neuro related he basically felt there was not a difference/need to differentiate between APS affecting different areas of the body and did not use other labels for it. Don't know if this is a general view but either way they are basically confirming you have APS despite the seronegative results so that is good!

[Wittycjt]

Log in to "medscape.com", put your "Sneddon's Syndrome" in its research box and voila... You should get info! Let us know your findings.