OM Story Share: Diana and Barbara BAP1 Interview
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Show Notes
•Barbara's story•
I was diagnosed with OM in April 2015.
My optometrist found the tumor on a routine eye exam, and then referred me to the retinal specialist.
I had a medium sized tumor with plaque treatment (4 days).
I had the muscle released to insert the plaque. I didn't have tumor testing because insurance wouldn't pay for it in 2015.
I have 20/40 vision in my right eye. I had a cataract removed, a laser surgery and now get regular Avastin shots.
I was tested for the inherited BAP1 tumor predisposition syndrome gene due to a family history of cancer and found out last spring that I have the gene.
•Dianna's Story•
Hi my name is Dianna Beck! I was diagnosed with OM in February 2018 and had enucleation at Stanford. I was 30 at the time of diagnosis and had blurry vision in my left eye for about a month before we found my tumor. It was wrapped around my optic nerve so I would have not had any vision if we had done radiation. My tumor was class 1A but PRAME+, and I found out I have the BAP1 germline mutation. It’s been about 3 years since my diagnosis, surgery, and prosthetic eye. I get MRIs every 6 months currently.