A Family History: First to be Diagnosed
Last updated: April 2022
I was diagnosed in 1979 after about 6 months of unexplained symptoms and am grateful to have had a family doctor who was an incredible diagnostician.
Some wait years for diagnosis
Some of my friends in my support group were not diagnosed for years-in one case it took longer than 10 years.
Early symptoms of lupus
I first noticed rashes that came and went. Having always had sensitive skin, I wasn’t that concerned. Then my hands and shoulders became stiff. Again it was intermittent extreme fatigue occurred, but I had 4 children and was very active in my church and community.
The doctor's concerns
At a yearly check-up I mentioned what I was experiencing. No symptom seemed to be related to anything else. Just a lot of odd issues. On one occasion I experienced major joint swelling, but by the time I had an appointment, it had gone down.
Doctor said he knew me well enough to know I wasn’t the type to be overly concerned, but he was.
Testing for lupus
A simple blood test showed that Lupus was likely the culprit. The rheumatologist took a family history.
Family history
My grandmother had had symptoms most of her life. Days after my first symptoms, my mother was diagnosed with Raynaud’s. My niece developed lupus in her early 20’s, although her twin sister has not. I have no doubt that genetics plays a role in developing lupus and am hoping that none of my other family members will have to experience this difficult disorder.
Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?
Community Poll
Which resource do you think is most urgently needed in the lupus community?
Join the conversation