Sticky Blood-Hughes Syndrome Support
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Are most of the people on this site from the UK?

I started on this site about a year ago, but haven't posted for the last 6 to 8 months. Am back again. It seems most members are from the UK. Most recommendations are to facilities in the UK. Are there many members from the U.S.? Are things handled differently with medical care, facilities, specialists, etc in each country?

13 Replies

Hello, yes this is a UK forum attached to the UK charity, however as you are probably aware we have lots and lots of members from the USA on here, and I/we endeavour to help members find contacts and care in the USA, also for that matter in many other countries. I usually post this link for the USA: and of course other members in the USA usually respond as to where they have gone for good care with knowledgeable medical consultants who understand how to manage and treat Hughes Syndrome/APS MaryF


Mary has answered your question in general but I will just add that although there is diagnostic criteria which is set by world wide symposium of specialists that come together for such things, unfortunately this is mainly for research and in general practise it can vary from specialist to specialist and country to country. Good practise normally dictates that patients should be dx on their clinical history, symptoms and blood tests presenting at the time and not just on a diagnostic criteria. In the USA for instance your litigious society tends to rule how your Doctors will act, which is a shame because they put insurance interests before their patients needs.

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Hello Mozelle I'm here in the US, in FL. I'm not an expert but would be happy to share my US resources if you need anything


Hi. Im also in FL. Where in FL are you?

I was just diagnosed 2 days ago, and scared 😳

Taking Plaquenil, Tramadol, and in treatment for my digestive system. Depressed and tired of pain, fatigue, etc!! My Drs dont seam to know much about it. Im 42 years old but feel like I'm 80


Are you seeing a rheumatologist? That is important. I've been dealing with lupus, RA, Apl for many years (20?) and your rheumatologist is key. it is a mental adjustment to know you have something there is no cure for so very important to be informed and get it as much in control as possible.

You can do it!


thanks for all your replies. So far, I haven't had a problem with insurance companies--all my treatments and tests have been covered. But to answer Mary, you are so right--they put first, am I going to get paid? before they prescribe. I've been lucky with my doctors--I have a main Internist, and when I see him for a problem, if he thinks I need a specialist, he recommends one and my insurance company covers it. "So far". My problems here are with the drug insurers. Sometimes the doctors will prescribe a medicine and my drug plan won't cover it. I either have to pay out of pocket, or have the doctor prescribe something else.


appeal appeal w/ insurance companies.....if you can submit research info

from HSS for an example the insurance company might reconsider...

go up the chain....the low level person who reviews medication prescriptions probably has NO CLUE...AND JUST not take NO

for an answer 1st time around...


our condition could lead to a STROKE if not treated with right medication.

be PROACTIVE W/insurance possible outcomes


I live in upstate NY....and see an APS specialist in northern NJ....Feel free to contact me for info on how to locate Rheumatologists in other parts of the US

Hospital For Special Surgery in NYC (rheumatology and autoimmune disorder

specialists are found here) is doing research on APS check out this



I live in upstate NY and my Rheumatologist is in NJ...check out this link

HSS is doing cutting edge research on APS


Where do you live? Im in nyc


Hi Loretta

I live in central New Jersey. Where in NYC do you live?



Hi,I am central N.J.too.

I have Lupus. A dreadful disease.Been reading your input mozelle.hope you are well,and I am glad your test came back negative!


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