Sticky Blood-Hughes Syndrome Support

American Doctors for APS Sufferers

I am just writing this for American APS sufferers who are having trouble finding doctors. I am in the UK but found the following information on the internet. You may know it already and have discounted it.

Just in case it should be of use to someone...I read a brief description of APS by a Dr Jan M Pankey MD who is herself a sufferer apparently. She works at the Childrens Hospital and Research Center in Oakland, California. This information then had a link to an organisation called the National Blood Clot Alliance and the web url is

The site looked very interesting and it may well be information you already know about. I'm sure most APS sufferers have Googled most things! I thought I'd pass it on just on the off chance that it may be helpful.

9 Replies

This is great, and this place is another source of great info and contact as well

Mary F


It is hard to get an autoimmune diagnosis here in the States. I have a theory for this: Barbara Eichenreich (sp?) wrote a book on American optimism,"Bright Sided" wherein she muses that our belief in the "power of positive thinking" is so American, and also so hurtful (at times.) We, as a nation, refuse to differentiate between an often grim reality and the scenario we wish to see. And if you see that grim reality on the horizon which then comes into fruition, your foresight was not necessarily "accurate," but rather it was you "negative thoughts" which brought about the bad scene.

The flip side of this "positive thinking" paradigm is found in autoimmunity and rare diseases. If a patient is exhibiting bizarre symptoms which do not have a measurable cause, then it must be due to "negative thinking," and well meaning doctors must not, under any circumstance, encourage that negative thinking by actually engaging in a productive discussion of symptom cause and effects.

I am a Yank and I do not wish to take a jab at our national devotion to the power of positive thinking. I believe that positive thinking in any discipline, is a vital component for success. And negative attitudes are often THE main cause of failure. But as a nation, we tend to go a bit overboard on this and -- my hypothesis -- doctors tend to go a bit overboard on the flip side and discount all "negative" symptoms as induced by "negative thinking."

My 2 cents.


Several times in the past doctors here in the states told me it was "all iin my mind" as they could find no reason for the symptoms. So discouraging...because we know it isnt in our minds. I was told I had an occular stroke 12 years ago...loss of peripheral vision for several weeks in my left eye. Now, 12 years later they say that never the same hospital to boot!

We put a lot of stock into our doctors, but I have to always remind myself that they are "practicing medicine". It is by far an exact science and they learn as they go as well. Unfortunately some fall through the cracks .... and that is a shame.

How many times have you been in this you say where you tell someone what is happening and it is just dismissed like you didnt even tell them. Ugh.... got me


Thanks, my employer, a major national Christian on profit broadcaster.

Is building a case to fire me due to my short term memory.





are you in America or UK as the support will be diffrent but they cannot discriminate against you due to your disability without showing reasonable adjustments



Sguye....Paddy is OH so right....this is against the American with Disabilities Act. As Paddy can request reasonable accomodations at your place of employment that will allow you to continue to do your job. The company is under a legal obligation throught the Americans with Disabilities Act to give you those accomodations. You must show your disability... have records to support it and your request must be in writing.

Keep a paper trail of EVERYTHING that is done, said with dates and such...very important.

Here is some brief information ...


While I was visiting my Mom at her nursing home I popped into their physical therapy room and posed a question based on what I understand of your predicament. They think that occupational therapy would help you improve a Hughes Syndrome patient's memory, and, if you are recovering from stroke/tia/mini-stroke issues most insurance will cover it, and you just need a script from your doctor. It is hopeful that your employer, when presented with knowledge that you are in occupational therapy, will deduce that you will improve and back off from the firing threats. I'm crossing my fingers.


I too had a lot of short term memory problems before the warfarin finally put an end (hiatus?) to the TIAs. I found this approach to help:

Of course, I did not have a "for pay" job but was, and am, a stay-at-home Mom, so I had a lot of slack during recovery.

I really, really hope you get through this with a satisfactory employment situation. I'll be thinking of you, and let me know.

PS: Keep plugging. Read difficult books, work puzzles, play music (or learn a new instrument.) 6 months after I started warfarin my neurologist repeated the MRI. He (literally!) came dancing into the treatment room, put both the recent and the old MRIs on the reader and said, "I never, ever, ever in 100 years would have ever picked this as the '6 months before' and that as the '6 months after' results. Brains aren't supposed to get this well this fast. What did you do?" I told him I had revisited my Latin book and had gone back to fiddeling around with my guitar. ANd that I read every day. "Good moves," he said, "obviously good moves."


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