•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.
E64: SPECIAL ANNOUNCEMENT You+10 Challenge!
E63: A Caregiver’s Perspective, Guest, Lisa Durbin
E62: Enucleation 101 (part 2) with Julie, Lindsay, & Kristen
E61: RARE² Rare Disease Day Webinar
E60: Systemic Therapy 101 with Dr. McKean
E59: RARE² Panel Interview - Kenny, Yvonne, Presley
E58: Enucleation 101 (Clay, Alison, Danet, and Wendy) PART 1
Eye on Mental Health: Session 4: Beginners introduction to meditation; taming the lizard brain
Eye on Mental Health: Session 3: Healing with Spirituality
Eye on Mental Health: Session 2: Coping with your diagnosis, your new normal?
Eye on Mental Health: Session 1: Getting Your Passion Back; Turning Talents into Healing
E57: The Happy Cookbook Project with Kathy Doocy
E56: Unrealistic Timelines in a Cancer Diagnosis
E 55 Q1 Webinar: A Living Library for Uveal Melanoma with Dr. Lauren Dalvin, M.D.
E54: Tips for Navigating Trigger Dates with Danet Peterson
E53: Purpose and Faith in an OM Diagnosis with Reagan Lambert
E52: Steps for Sight 2023 is NOW OPEN for registration!
E49: One-eyed Fly Guy, an OM survival story with Greg Hobbs
Eye Believe 2022: D2T1 FINAL SESSION ”New Advances in the Treatment of OM” and ”Understanding Genetics”
E51: Why Liver Directed Therapies with Dr. Marlana Orloff
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