COLUMN: I have a rare disease. Here’s what you should know about it

Publisher’s note: The final day of February each year is Rare Disease Day, and we at The Sentinel wanted to take the opportunity to let parents and members of the community know about one rare disease in particular with which one of our reporters is very familiar.

By Mike Hazlip—
I was diagnosed with Coats’ Disease at the age of two. I don’t remember much from those early years, but my father said he noticed I would cover my left eye in bright light. After a consultation with an ophthalmologist, I was scheduled for laser surgery.

Coats’ Disease is a rare condition where the blood vessels in the eye develop abnormally. Eventually, small aneurysms can develop and a fluid called “exudate” leaks into the retina. If left untreated, the retina may become detached causing full or partial blindness.

One of the treatments for Coats’ Disease is laser photocoagulation. This is a minimally invasive procedure where a laser is used to cauterize the leaking blood vessels. The patient is awake for the procedure and may experience temporary blindness from the bright laser light.

After the procedure, my Ophthalmologist, Dr. Neil Kelly, was not optimistic about my chances of regaining the vision in my left eye. Two weeks later, my eye had cleared and I grew up with normal vision while going in for annual check-up appointments. Dr. Kelly said the disease was stable, but he was concerned about what he called a “suspicious area” of blood vessels.

According to the Jack McGovern Coats’ Disease Foundation, around 70% of all cases are male, and almost always unilateral. The typical age of diagnosis is between 8 and 16 years old, according to the site.

There is currently little research, but Coats’ Disease does not appear to be inherited. No racial or ethnic predilection has been discovered in individuals with Coats’.

I consistently had 20/30 vision in my left eye at each check up until age 16. I remember waking up with blurry vision in my left eye. By the next morning, I had lost all central vision in that eye. We made an emergency appointment to confirm that a new aneurysm had developed and Dr. Kelly would preform another laser procedure.

While I don’t recall anything from the first procedure at age two, I do remember this next treatment well. I did not feel any pain, but still could not help but flinch when the laser light fired. My vision went completely black after the first few flashes of the green laser beam, but gradually returned to a magenta hued world that eventually became more clear. After several weeks, my central vision once again returned to normal.

I have since had a number of other procedures as an adult. Dr. Kelly has since retired, but I am still with the same ophthalmologist group, Retinal Consultants on Greenback Lane. My vision was 20/20 in my left eye at my last check up this month.

Some early warning signs of Coats’ are loss of depth perception or one eye turning inward or outward. One important warning sign any parent can look for is a yellow reflex in one eye in a photograph taken with a flash.

The red reflex known as “Red eye” in a photograph is caused by the light from the flash reflecting off of the back of the eye. Both eyes should reflect the same way if the subject is looking directly at the camera.

If one eye looks yellow, or has a “yellow glow” it might be warning sign of a more serious eye condition like Coats’. If you see the yellow glow in your child’s eye, or in a photograph of someone else’s child, don’t hesitate to talk to your doctor.

In my case, I was very lucky. Most patients with Coats’ are fully or partially blind. Early detection and the marvelous work by some gifted surgeons have made the difference in my case. My aneurysms have also been outside my central vision.

But while modern medicine and surgical skill are important, I have also prayed, as did my parents, and I am grateful to say I was blind, and now I see.

Mike Hazlip has been a reporter and photojournalist with the Citrus Heights Sentinel since 2020. More information about Coats’ Disease can be found at www.knowtheglow.org.