By Mary Patalita
Special to GoHolyCross.com

“Jack, you will have this disease for the rest of your life,” said the doctors to Holy Cross junior men's lacrosse player Jack McGovern (San Francisco, Calif.). McGovern was diagnosed with Coats disease, a rare eye disorder that causes full or partial blindness, in 2006 when he was just 11 years old.

He remembers the day very clearly. “I was at home, having a sleepover with my friends,” said McGovern. “When I woke up the next morning, I opened my eyes and knew something was wrong. It was as if I had been looking at the sun for a while because there was a black dot blurring my vision. I was confused because I was just asleep and not staring at the sun. I kept looking at it and thought this is weird, but I let it go for a day.”

The next day McGovern told his parents who took him to the eye doctor. The local eye doctor did an eye exam, and deduced that McGovern had an abnormality in his left eye. The doctor referred him to a retinal specialist in San Francisco. Fortunately, this doctor happened to be one of the leading pediatric retinal surgeons in the world; he diagnosed McGovern with Coats that day. 

Coats is caused from abnormal development of the blood vessels that cause the vessels to detach from the retina in the eye. Typically when light comes into the eye, it hits the retina and flips to shoot an image back to the brain. When the retina is detached, light cannot go into the brain, and as a result a black spot forms where the retina is detached. This is what happens in Coats disease.

For McGovern, he luckily caught it early and has had three laser eye surgeries. With annual checkups, his Coats is under control. “I have to monitor it; it never goes away; it's a condition I have,” said McGovern. “If it ever gets worse I will have to go back in for another surgery but for now it's under control.”

Coats is not something that McGovern, who has started in all 30 games of his collegiate career, lets affect him. “Athletically, I wouldn't say I've had any obstacles that have been different than anyone else,” said McGovern. “I don't use Coats as an excuse or ever blame something on it. I don't let it affect me because I try not to think about it. My right eye compensates for my left, so I never notice it on the field.”

Some people are not as fortunate as he was in his early detection. If Coats goes untreated, one could lose one's eye or go completely blind. Because it is a rare disease, there is not much information out there about it.

“It is wildly misdiagnosed because a lot of people simply don't know what it is,” said McGovern. “Especially in countries that are not as medically advanced as we are in the United States, many patients lose their eye because of the lack of information about the disease. When I was first diagnosed, we went online and typed in Coats disease and there was only one website with very little information at all. Since then we have tried to raise awareness and money in order for more research to be conducted about the disease.”

The most difficult part about Coats now for McGovern is seeing others struggle from it. Now that his is under control, he has turned his focus on finding a cure for others. “When I was first diagnosed I was 11 years old and I didn't really understand what it meant,” said McGovern. “I guess the first time they told me I would have this for the rest of my life, that's when it really hit me and that was hard. The hardest part for me now is seeing families who are really affected by this, for example seeing kids who have to lose their eyes, hearing of kids that get teased in school because their eye looks different, seeing moms who are in despair because their kids are in pain and have to get surgeries. Hearing those stories is tough but it motivates me to help with the foundation.”

In order for more information to be discovered about Coats, McGovern and his family created the Jack McGovern Coats Disease Foundation. “One of our biggest missions of our foundation is awareness,” said McGovern. “We have sponsored several doctor conferences that have allowed doctors from Chile, Japan, all over Europe and the United States, to come to San Francisco for a conference. They come to present on their different ideas about Coats disease and different retinal diseases. These conferences have been really beneficial to spreading awareness.”

In order to raise the money necessary to facilitate such conferences, the Jack McGovern Coats Disease Foundation hosts an annual golf tournament. Last year they raised upwards of $40,000. This year they are coming up on their 10th year hosting the event.

The Jack McGovern Coats Disease Foundation puts the money from fundraising to a good cause. “Right now we are funding Genentech, which is a big pharmaceutical company,” said McGovern. “They are doing a study on the blood of those with Coats and their family members to look for patterns on the genes to see if anything matches up. This might tell them more about how Coats develops. It's incredibly complex. It is like looking for a needle in a haystack. Fortunately, they have some incredibly smart people working on it.”

This past summer, the Jack McGovern Coats Disease Foundation raised awareness in the state of California. They lobbied the California Legislature who approved their proposal to make August 17 Coats Disease Awareness Day in California. “On August 17, we went up to Sacramento and got the Senate to approve our proposal,” said McGovern. “I was able to stand on the floor of the Senate as I received a standing ovation from the Senators. It was really cool.”

The team has been a big support system for McGovern. “Whenever they find out about this disease and this foundation they are always very interested,” said McGovern. “They want to know all about it. They are always eager to help. They want to get the t-shirts. They want to get the wristbands. They want to help do events. They've been great.”

In particular, teammate and roommate junior Parker Greiwe (Indian Hill, Ohio) commented on McGovern's desire to find a cure. “Jack has many passions, one being his foundation,” said Greiwe. “Jack has found a way for teammates and the lacrosse community to actively support the Jack McGovern Coats Disease Foundation.”

Personally and athletically McGovern has overcome this disease as he does not let Coats affect him. For now, McGovern is seeing into the future as he and his foundation hope to spread awareness and raise money. 

For more information visit the Jack McGovern Coats Disease Foundation website or to donate go here.