Maleah

Maleah's West Highlands Way Walk for a Cure

Maleah is currently walking 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."

"I am nearly halfway done with the walk, and it’s been more challenging than I expected. But I’m pushing on. I feel motivated by all my friends who are supporting me and who have donating to the Foundation on my behalf."

We are behind you all the way, Maleah! Keep on moving and thank you for your support of the Foundation! https://coatsdiseasefoundation.networkforgood.com/.../225...

Maleah's Story:

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!

FAQ

At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.

Questions to Ask Your Doctor (Download PDF)

  • Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:

    • How do you know that this is Coats’ Disease?

    • Has your doctor treated other patients with Coats’ Disease?

    • Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.

    • What Stage of Coats’ Disease is he/she in?

    • Will his/her vision get worse over time?

    • Will the eye have pain?

    • Will his/her eye start to turn out? Is muscle corrective surgery an option?

    • Are cataracts likely?

    • How likely is glaucoma? (due to retinal detachment)

    • Is there calcification?

    • What is the anticipated disease progression?

    • Is there a thorough vision exam available?

    • Where is the vision affected? (central/peripheral/distance)

    • Does he/she have depth perception? (3D visibility)

    • What about the non-Coats’ eye?

    • To what extent is his/her vision affected?

    • Will we be able to use this as a baseline to measure progress/decline?

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