A big thank you to Camiel for sharing her story of her recent MFC diagnosis...
My name is Camiel, I’m 32 years old and from San Francisco, California. In June of 2020 I was diagnosed with Multifocal Choroiditis/Posterior Uveitis.
Randomly one day I woke up with a large peripheral blind spot in my right eye along with flashing lights, strobing/scintillating, light sensitivity, and floaters. Initially I thought I had a detached retina because of the rapid onset of changes (fun fact- I worked at an eye doctor’s office many years prior!). What the specialists found was scarring that correlated with my blind spot and significant inflammation in my retina. It took me a couple specialists to get a definitive diagnosis as this condition is so rare.
Multifocal Choroiditis primarily effects white women beginning in their 30’s. It is considered idiopathic in nature (meaning there is no rhyme or reason as to the why’s or how’s) and the treatment varies by severity. Oral steroids, steroidal implants, anti-VEGF injections for CNVs, and long term immunosuppressants taken orally or through injection are the typical course of action in suppressing/slowing the progress of the disease, but there is no cure and the vision loss is permanent. In approximately 80% of cases both eyes are affected. Many end up legally blind in one eye and with significant vision loss in the other.
As of right now my disease is only in my right eye, which I am endlessly thankful for, but I understand that has the ability to change any day. Like any vision threatening condition the uncertainty is one of the most challenging aspects as has been getting accustomed to the visual disturbances/changes, and adjusting to treatment side- effects. Getting diagnosed during the pandemic has been especially challenging/isolating and I’m super thankful for the visually-impaired support network I’ve found via social media. With this diagnosis, experiencing grief for my loss of vision and drastic change in how I experience life and day to day existence, finding acceptance (which will likely be a lifelong process), embracing gratitude, and sitting with uncertainty, I have realized that being visually impaired will now be very much part of my identity. Much like how I embrace other parts of my identity, I strive to treat this no differently.
I believe that is so important that as a society we normalize various abilities and remove the stigma attached to them. It is also so important to keep in mind that not all disabilities are visible and that anyone could become disabled at any time in their life.
This sombre revelation truly demonstrates how valuable empathy and compassion are- empathy for others as well as empathy for ourselves.
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