A little over 12 years ago, I noticed something was “off” with my vision. The next several years were spent bouncing from doctor to doctor trying to figure out why my optic nerve was hemorrhaging and a blind spot was developing in my right eye. Eventually, I was put on high doses of prednisone, among other immunosuppressants, to try to control the inflammation. By 2013 my left eye was also affected. I started receiving intravitreal injections in 2014 before the birth of my first son. My official diagnosis is bilateral multifocal choroiditis with subretinal fibrosis.
Throughout my journey, I’ve alternated between spending hours researching (desperately grasping for a “why’) and burying my head in the sand (if I don’t acknowledge it, maybe it will go away). I’ve tried everything my doctors and I can think of, from immunosuppressants and the Retisert implant, to elimination diets and yoga. My condition is the definition chronic.
I’m still getting injections these days and complications from all of the treatments persist. (I’ve had a handful of surgeries for complications including cataracts and glaucoma.) Although tenacious, the inflammation does respond to treatment and I am in caring and capable hands at the University of Washington Eye Institute in Seattle, WA for which I am very grateful.
This website is my attempt to document thoughts and information I’ve gathered, learn something and hopefully help others. It’s a place to focus on the disease and then leave it so I can live my life, taking only what serves me.
See the Good. Even if you have to Squint.
STORIES & SUPPORT
Coronavirus Related Info
Articles and web sources
If You’re Immunocompromised, You Are at a Higher Risk of Coronavirus—Here’s What That Means: Health.com (March 2020)
Taking Immunosuppressants? Fauci Says Get the COVID-19 Vaccine (December 2020)
Coronavirus: World Health Organization
Impact of COVID-19 pandemic on uveitis patients receiving immunomodulatory and biological therapies (COPE STUDY): British Journal of Ophthalmology (September 2020)
Managing Uveitis during the COVID-19 Pandemic: American Academy of Ophthalmology (May 2020)
non-infectious uveitis during the COVID-19 pandemic: British Journal of Ophthalmology (May 2020)Download
from the COVID-19 Global Rheumatology Alliance physician-reported registry: Annals of the Rheumatic Diseases (May 2020)Download
I am not a doctor or a web designer. I want to make this website as user-friendly and helpful as possible. Comment or question? Something to add? Please let me know!