Put On Purple today!

So, I was going to leave illnesses behind to blog about something completely unrelated to my medical adventures, but then I realized today is Lupus Awareness “Put On Purple” Day, so decided to post my POP selfie.

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Before I was diagnosed with Sjogren’s Syndrome, when I was trying everything I could think of (other than medication) to alleviate the myriad of muscle and joint aches I was suffering from, a physiotherapist suggested I ask my doctor to be checked for Lupus. I had asked before. I asked again. My doctor refused, saying I did not have Lupus or any other AI connective tissue disease. So I found a doctor who was willing to test for it.

I did test positive for the ANA blood test but not the anti-dsDNA antibodies for Lupus. A tiny percentage of people who do not have Lupus can test positive for ANA but most people who test positive do have Lupus. Symptoms have to be considered alongside blood work.

If you’d like to know more about the specific blood tests here is a reputable link: http://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

As I mentioned in earlier posts I did also test positive for the SS-A and SS-B antibodies specific for Sjogren’s. SS-A are related to sun sensitivity, so though I have had the definitive Lupus “malar rash” on my face in the past, some doctors felt it was due to the SS-A antibodies in combination with too much sun exposure, not due to Lupus.

It only takes mere minutes, even fifteen in direct summer sun for me to end up with a malar rash accompanied soon after by extreme fatigue. Some people think sun exposure for people with Lupus or SS-A antibodies of Sjogren’s is no big deal. They are wrong. Even minimal sun exposure can result in a systemic response, possibly even triggering an autoimmune attack on an individual’s organs such as kidneys, the brain, or lungs.

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The jury still seems to be out, no agreement between doctors thus far on my Lupus diagnosis. Although I do have other symptoms of Lupus, one doctor said I don’t have “full-blown” Lupus with “organ involvement”. and because I additionally have had skin manifestations of yet another autoimmune connective tissue disease – dermatomyositis – which affects the skin and underlying muscle tissue they are calling what I have “Undifferentiated Connective Tissue Disease”.

There is an accepted criteria for diagnosis of Lupus and a person must exhibit 4 of the 11 characteristics over time to be diagnosed, I have six. To learn more about the diagnostic criteria and symptoms visit your local Lupus organization website or click here:

http://www.lupus.org/answers/entry/lupus-diagnostic-criteria

The Undifferentiated Connective Tissue Disease diagnosis is on top of Sjogren’s and Autoimmune Hepatitis. With my body, the fun just never seems to end! Most of the people I know personally who have Sjogren’s also seem to be collecting other autoimmune conditions as time goes on.

We’d all prefer to collect something else. However it seems getting one AI connective tissue disease such as Lupus, is like getting one domino, soon you collect more to stack alongside, then from time to time, one gets pushed over toppling the others spinning you into a “flare” of one or more of your conditions, then possibly adding yet another.

Part of why Lupus and related conditions are so difficult to diagnose is every patient can present a different constellation of symptoms, and blood tests do not always give definitive answers. Awareness will help create quicker diagnosis times, expedite necessary treatment protocols, and hopefully lengthen life span while enabling higher quality of life as well.

Help spread the word and “Put On Purple”!

9 thoughts on “Put On Purple today!

  1. Not sure why I’m not finding you in my reader Suzanne because I would otherwise have popped by a bit more frequently!
    I test positive for ANA but not much else (was looking for an explanation of various painful joints) and my eyes are a bit dry – bordering on becoming a constant irritation but obviously compared to everyone else in the clinic I was seen in, I was at the level of ‘put up and shut up’! Anything else happens, I’m coming back to you! You seem to know more than my doctor 😀
    In the meantime, I remember a young man when I was back in my teens who was described to me as ‘allergic’ to the sun. I think his poor face looked a lot like the rash you’re illustrating and I wonder now whether he had an autoimmune disorder.

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    • Thanks for popping in Lisa! The autoimmune connective tissue diseases present with so many different symptoms, or combinations of symptoms in different people that is why I mentioned doctors
      have difficulty making a definitive diagnosis more often than not. Beside which, blood tests may be negative even in presence of symptoms for some people, especially at initial onset. Then of
      course for things like dry eye and / or dry mouth there are multiple reasons for those symptoms beside AI diseases, such as previous cancer treatment. It really takes an excellent
      diagnostician to sort it all out, and sadly there do not seem to be many of those out there! So it then behooves the individual suffering through the myriad of symptoms to do their own research,
      keep track of symptoms, diagnostic testing etc. put the puzzle pieces together, then advocate to the medical experts. Not always, but often this is the case based on what I have heard from so
      many other patients. Unless of course you can go somewhere like the Mayo clinic right off the bat where a team of specialists will be assigned to diagnose you. I live in Canada,
      and was not of economic means to do that. Anyway, thanks for reading, glad to know my posts are being helpful, providing some insight. Take care, be well!

      Liked by 1 person

      • It seems increasingly to be the case that to get the best treatment requires the patient (I hate that word) to keep track of their own ‘big picture’ and that’s why posts like this are so informative. Complex diseases have over-simplified ‘public’ information on them and I suspect there will be people out there can learn from your experiences. (Is this where the book lies, perhaps ?!)
        And thank you for your sign-off sentiment. Be well back xx

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  2. I don’t especially like the word patient either! And I must confess I am not always a patient patient. 😉

    I have been tossing around the idea of a medical memoir for years, but have had difficulty with how I might structure it. Karr’s book has given me pause for renewed thought!

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