Getting visibility for APS

I'm new to this blog and have family members with APS and/or symptoms but sero-negative. I'm also a health policy researcher and would like to write an article about the value of learning from patients, forums like this and clinicians who really listen to their patients. I thought I might use APS as a real life example because it is close to me personally. Would you say it is a rare disease or that we have yet to figure that out?

8 Replies

  • According to my doctors, it is classed as rare. This forum has members all over the world, so I'm not sure if you just want US participants or are directing your questions to everyone.

  • I have APS, but I don't know anyone else with it, (rarity value) and would be interested in anything written that helps to promote awareness of it.

    Only in the last few years have I understood something of the complexity of having co-morbidities. (illnesses that appear to have partners more often than not).

    Please then could you do the same for thyroid issues, where the people who first developed treatment (1880's) knew more about it than most Endocrinologists appear to today.

    Admin: apologies for mentioning thyroid issue.

    Thanking you in advance.

  • Hi, this is a great idea writing an article and I have some ideas for that, if you private message me I will give you some details. MaryF

  • Yes it is classed as a rare disease at the moment but with more awareness I wonder if that might change. As far as the value of Dr's that listen to their patients, well you could not have a better example in Prof Hughes! His famous catch phrase is "you must listen to your patient" as he says if you do so they will give you their diagnosis.

    With regards to Forums like this being helpful, well the sheer success not only of this community but of this whole platform with its many many forums for just about every condition you can think of tells you that Forums like this have a place as part of your medical journey. Dr's cannot possibly give the support that patient groups supply and the value of talking to somebody else who has gone through or is going through what you are and knows exactly how you are feeling, physically, emotionally plus the impact on family, friends, education and employment is just immeasurable.

  • This forum helped me immensely and provided me with the resources I needed to find a competent doctor. People in this group recommended books and articles that helped me understand all the physiological manifestations of APS. I also got a copy of Dr. Hughes booklet from info on this website for my physician. My personal opinion is that these venues are crucial and doctors should routinely refer their patients to reputable sites for support.

  • I have a personal interest in finding out about good APS doctors on west coast of U.S. Because of family member with symptoms and family history. But, I also have a professional interest in writing articles about rare diseases and how the medical establishment is often out of touch with patient reality and if takes champions like dr. Hughes to make headway as well as patient forums like this one to spread knowledge and shared experience. I private messaged Mary and will get started on such an article. Next I might tackle comorbidities generally which can fall between the cracks in an over specialized medical establishment. Thanks also to everyone helping me to navigate the best treatment for seronegative APS and sharing your experience.

  • You can read my posts and if you are interested in using me as a source you can contact me. I have tended to repeat myself in my posts because 1) I forget what I have already written and 2) I was really traumatized by the way I was treated by medical personnel when I was very ill. But my story isn't the typical one, since it involves the MS like version,

    I have thought of writing about it myself, but I'm not sure I'm ready to.

  • I have been Dia. for 7 years this past Sept 1 ST , I live on the East coast N.H. I am a APS triple positive Primary . have seen 27 Dc's most i still see and since 2011 have had more than 125 tests done . Some Dc's have been interested and wanted to learn more so than others. I have walked out of at least a half dozen or more appointments because the Dc's were just NON believers that this disease even exists. so i have seen many good Dc's also needless to say.the big thing here is we are all so much different with things and react so differently to med's. i have now 27 Dia. problems most directly related to the APS.There have been some West coast people on here Cal. Wash. Org. Tex. maybe they will see this and get in touch with you .I would be interested in following you venture here as i see it as a positive thing . I for one will not go to the E.R. with out a DC. calling ahead and bing there by phone when i get there as they have nearly killed me 3 times and they don't have to listen to your specialists unless you insist , and that is what i do . Problem lies with the lack of knowledge of this disorder . looking forward to seeing more from you, Thanks for the attention you are giving this

    C & J from Penacook N.H.

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