Following Sara’s story, Surprise Surprise, we delve into Sara’s 7 year challenge to getting an official diagnosis.

“My official diagnosis’ was derived in the Fall of 2014. It was after my 10-year-old niece said that I had a bald spot behind my right ear. Because of the location of it, I had no idea that I had a perfectly round bald spot the size of a softball underneath my hair! Needless to say, I made a visit to a family practice doctor that week and after hearing my health history he ordered a slew of blood tests. Three days later I got the dreaded phone call. You know it’s not good news when the actual physician calls you with your test results! When I heard him say the words,

you’ve tested positive for Lupus,’ I was utterly speechless and terrified.

Because of the high possibility of these tests being “false positives,” he had me come back in the next day so that they could draw more blood to test me again. Needless to say, the results were the same. In addition to that this test showed that I also have Sjogren’s Syndrome … Between my initial diagnosis in September through the month of December, I was at doctor appointments at least 2 days a week.

I went from being the person who did anything possible to avoid going to the doctor to having my very own Rheumatologist, Dermatologist (for the Alopecia), Cardiologist (for Pulmonary Hypertension), and my Eye Specialist…I am not ashamed to admit that my emotions have gone from the initial shock and disbelief, to fear, to anger, to immense frustration. Some days I’m afraid of what these diseases are doing to my body and some days, in order to keep my sanity, I simply choose to forget that I’m dealing with all of this and I move through the day as if I’m just like every other healthy person who gets up and goes to work every day. Clearly this isn’t the life I would’ve chosen for myself, but I’ve come to accept the fact that certain things happen to us that we simply have no control over. Based on that, I will continue to strive to control what I can, including my thoughts, feelings, and emotions. And I will continue to live my best possible life!” -Sara

Sara’s story resonates with me; does it resonate with you? We need your input!
How can we work together, as patients with multiple autoimmune diseases, to use data and create new tools to help ourselves, caretakers, and our providers?

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Edited By: Tiffany Simms

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