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Participate in this lupus survey if you live in the USA [Survey is closed]

posted in All on October 13, 2020 by

Donald Thomas

The Lupus Foundation of America wants to learn more about the difficulties in being diagnosed with lupus

Click here to participate in the Lupus Foundation of America Survey:
​The survey is about your experience with being diagnosed with lupus
After you take the survey, please consider commenting about the survey and about your experience with getting diagnosed. Newer and better tests are being developed. Doctors know that it can be very hard and frustrating. Using surveys like this can help us track over time how long it takes and what the diagnostic journey is like.


Donald Thomas, MD
lupus educator and author of “The Lupus Encyclopedia”


  1. I was 16 when I started experiencing symptoms. I was a gymnast and quit because I could no longer hold onto the uneven bars. I experienced joint pain as well. Test were ran but all came back negative. I was made to feel like it was all in my head.
    Fast forward 36 years when my husband unexpectedly passed. I went downhill. Couldn’t stand, walk was crazy exhausted. I was told I was depressed and to seek out grief therapy. I did and felt better mentally but the pain didn’t leave.
    I made an appointment with a rheumatologist thinking I had arthritis. She diagnosed me with Lupus. I was shocked, scared and had no idea what Lupus was.
    I have since educated myself on Lupus and have become an advocate for Lupus Warriors like myself. I am also advocating for Pediatric Lupus. I don’t want another child to go through their whole life without the proper diagnosis like I did.

  2. Sylvia: Thank you for sharing your story and for being a Lupus Warrior and advocate, especially for juvenile SLE. Our kids with SLE tend to be very sick and need all the help and advocacy they can get. Please keep up the good work, and thanks for reading my blog.

  3. I had recently lost my job (2009, along with millions of other Americans) and was creating a garden: hauled in 20+ 40-pound bags of garden soil, and spread it on top of a thick layer of newspapers I had put down to kill the weeds. I have always been sun-sensitive, so wore sunscreen and a hat, but probably not as careful as I could have been.
    A week or two into the project (in April) I woke up feeling terrible, like I had the flu, with fever and chills, muscle (or joint) aches, but with extreme exhaustion, as if a giant hand was pressing me against the mattress. Cleared up in a couple of days, so didn’t worry about it.
    Several weeks later (May) I developed an extremely red, extremely painful “boil” on the outside of my leg at the knee. As it continued to increase in size and pain , I saw my PCP, who prescribed an antibiotic and arranged an appointment with a surgeon. He prescribed another, stronger antibiotic, and drew a large circle around the boil with a Sharpee, and said to go to the ER if/when the redness and swelling expanded to the line.
    Two days later, I was in surgery in the ER, for what the surgeon thought was likely a blood clot, but which turned put to be an abcess. Sent home after a couple of days on IV antibiotics.
    Two months later (August) I was back in the hospital with a similar lesion on the other leg. Spent two weeks in the hospital on IV antibiotics, and had a Pic-line installed so I could continue treatment as an outpatient. A dermatologist biopsied the site and suggested it might be vasculitis.
    The Chief of Infectious Diseases for the hospital ordered a whole battery of tests, and took over coordination of my care, telling me later that the one thing he had learned was that, whatever this was, it was not an infectious disease. He suggested Sweet’s Syndrome, which he said was a symptom of something else – cancer, possibly, or rheumatoid arthritis or lupus. But all the tests were inconclusive.
    In November, I developed a somewhat different lesion on my ankle. Multiple layers of an inch-wide strip of skin became inflamed and peeled loose. Back in the hospital, infectious diseases doctor wanted permission to try an experiment for a couple of days. High doses of prednisone, which stopped the process in its tracks. Went home with a prescription for 40 mg a day. Leg healed, but I gained 30 pounds in 30 days and my blood sugar and blood pressure soared.
    I could never taper below 35 mg without developing more lesions, and broke my leg in a fall on ice in January, due to weakened bones. Thus began an almost 3-year odyssey of trying to find a treatment that would allow me to get off of prednisone. After trying a half dozen drugs that didn’t help, we tried Remicade, which finally worked well. Diagnosis: likely autoimmune.
    Tapering off the prednisone took several months, but, luckily my adrenal glands started working again, I could stop the prednisone, I lost the 30 pounds, and my BP and sugar normalized.
    Fast forward a year. I had been working at a new not-particularly stressful job, but 40 hours per week apparently was too much, and I developed pain in my legs and arms, Duchenne’s (sp) contracture of my hands, and then pleurisy. Happened to have an appointment with the dermatologist the next day, who prevailed upon one of our town’s two rheumatologists to see me the following morning at 7:30. He sent me for another battery of tests at the hospital, including of the heart and lungs. Off work until test results were back, December of 2014, and finally, a diagnosis of lupus. We continued Remicade and added hydroxychloroquine.
    I was extremely fortunate to be cared for by excellent doctors who took me seriously and treated me appropriately despite not having a definitive diagnosis.
    However, I am now 66, have had lupus for over 11 years and Sjogren’s for at least 6 years, and am now experiencing diminishing kidney function, so have not been able to avoid all organ damage.
    But I still feel blessed. 50 years ago, I’d have been lucky to have lived with lupus for even 5 years. Today, I’m doing okay, and maybe will get a 3-D printed kidney before my own kidneys fail. Or maybe a stem cell reset. Or maybe a cure!

  4. Virginia: Wow! What a journey you have been on, and thanks for sharing your story. Your story is unfortunately not uncommon. It highlights how we truly need better diagnostic tools. I can only imagine how different things could have been for you if we could have accurately diagnosed you at the very beginning and got you on therapy to prevent the ravages of your autoimmunity.
    I also love your optimism. It would be so easy to be angry and pessimistic after all of that. I’m glad you are showing how one can be a fighter, enjoy life, and look forward to a bright future even after having been dealt such a bad deck of cards.
    Thanks for reading my blog, and I wish you all the best in the future!

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