Been wondering about APS pamphlets

I'm not sure if I have asked this before. But I have been wondering if there are pamphlets available on APS that I could take to the Dr.'s offices around my area because none of them seem to know anything about it. I can attest to this by the years it took to get diagnosed and how far I had to travel to find an informed dr. N order to get a diagnosis. I would love to take pamphlets into the offices of some of the drs that were insistent that NOTHING was wrong with me except I'm to mentally fragile to work or I have spastic leg syndrome. That's the type brilliant diagnosis I was getting from so called specialists like neurologist. What I want most is for them to take a moment to consider that there might actually be something wrong with this woman & not just blow her off telling her there is nothing wrong with her. By the time I got diagnosed I was disabled by all the strokes and was in the most of a thrombotic storm. Having up to 8 or more episodes a day. I would love to give the drs the knowledge they so obviously need. Is there a way to get pamphlets to distribute locally?

Thank u for your time

Souls Rebel

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9 Replies

  • Hi Soul-Rebel ,

    I wonder how you are today? Have you tried to find a Doctor who understands this illness? Are you on LMW Heparin today?

    We have tried to help you for a long time.

    Try to print out copies of what prof Hughes has said etc etc but I believe it will not help as some Doctors do not want to know what they do not understand and have not learned about.

    You must find the Doctor who knows. Keep away from the Neurologist and try to find a Rheumatologist who knows about autoimmun illnesses. Ask your grownup girls to help you if it is difficult. I am sure they want you to feel better as you could with the right treatment.

    Tell us please how it goes for you! Good Luck !

    Kerstin in Stockholm

  • So true, Kerstin. You would think they would want to be honest and just say Idk, I don't know. I guess this would hurt their egos, such a shame. It would save us from the run a round...

  • That being said you can find fact sheets at Go to the bottom of the page and tap on " fact sheets" there are many to chose from. Best wishes keep us posted on your progress with this, Cindy in nj

  • Did you try this soul rebel?

  • Yes I did go to the link and printed out a copy . Might pull more from NIH then take them out when I can. Thank you

  • Hi, we have no leaflets currently, but this will be something available in the future to match our charity website, which is currently catching up information wise. I found distributing various medical papers worked and also some of Professor Hughes' books to specific doctors involved in either my care or my children's. Once we have leaflets we will be certainly telling everybody on here. Probably it will be in the form of a download so that people can print off what they need. MaryF

  • That would be great. I just know when I needed them this was where I found too is based in the U.K. As the US you can't find least I couldn't!

  • Arthritic Research UK have booklet I was given from my rheumatologist. Maybe you could ask for some from there.You are lucky if you come against a doctor who knows unless specialised in that area or done some research.My GP doesnt

  • No specialists around. My PCP didn't know about APS either. Now what she does know is mostly what I tell her. At least she has enough respect for my intellect to listen an believe as she knows I study as much as I can. 🙂 Unfortunately she doesn't seem to read up on it herself. 😕

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