My Daughters Diagnosis
Last updated: May 2023
My daughter was diagnosed with Lupus Retinopathy. It all started when she woke up after a low-grade fever 99.2. She said she saw spots. When she looked at you straight on it was a black dot. Her peripheral vision was fine.
A revolving door of doctors
We went from the primary care doctor, to the eye doctor, to the ophthalmologist, then to a retinal specialist who was the actually the one to diagnose her. We even had to see a rheumatologist that took 11 vials of blood, the results were perfect across the board. We go back to the retinal specialist, and he said had you seen me after your bloodwork I would have said it was in your head. He said "but I know what I saw."
As of that day, there is only 6 cases of Lupus Retinopathy researched in the last 15 yrs. He did not put her on anything because he didn’t believe anything would work but time. Her eyes are stable now, he told us she may have a flare up again. It could be somewhere else or another symptom. She played basketball and now that I think back her recovery time took longer than normal. She is now 19 and a healthy kid. We just take it one day at a time. Look up this diagnosis, see how much info you can find.
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