100 Mile Walk for Coats’ Disease Research

In July 2023, at the age of 35, I received a diagnosis of Coats disease, a rare and unexpected turn given my history of near-perfect vision. The initial symptoms in my left eye appeared as distortions, which led my optometrist to suspect Central Serous Retinopathy. However, a referral to a retinal specialist confirmed Coats disease. This condition is particularly unusual in adults and even more so in women, but fortunately, my specialist was experienced with adult-onset Coats.

Treatment began immediately with multiple rounds of injections followed by laser surgery. Despite these efforts, the progression of the disease was only halted after I had lost nearly all vision in my affected eye. Thankfully, the condition has stabilized under the vigilant care of my retinal specialist, and there is hope that there will be no further deterioration. The vision loss, however, is permanent due to exudates leaking and settling at the back of the retina, obscuring my sight. Currently, no treatments or procedures can reverse this damage.

Adapting to monovision has been challenging, but I remain optimistic about the future. My commitment to supporting research on Coats disease is stronger than ever. This coming June, I plan to walk the length of the West Highlands Way in Scotland to raise funds for the Jack McGovern Coats’ Disease Foundation. My goal is to aid in the discovery of new treatments and potential cures that will benefit both children and adults afflicted with this condition.