I went through a period in my young adult years that I didn’t keep up with my appointments. However, I began seeing Dr. Pautler in my late 20s/early 30s. During those years, I developed strabismus, cataract, and eventually glaucoma in the same “bad” eye. He referred me to Dr. Guggino who removed the cataract and fixed the strabismus during one surgery. I am still without a lens in that eye, but obviously there was no need to replace it as I have no vision. Unfortunately, I still battle glaucoma. Fortunately, it is contained to the “bad” eye.

My paternal side of the family is filled with eye problems …some with complete blindness and others dealing with the threat/onset. That being said, I always chalked it up to “these dang family genes” and never gave Coats disease a second thought. Ironically my affected family members all live with the same threat, only we each received a different diagnosis (Coats, Wagner-Stickler, RP, MD, etc.).
I have always been able to do everything I want (except hang a straight picture). I am now 43 and have lived with this more than half my life and never worried too much until about eight months ago. I was sitting at my desk and noticed star bursts in my “good” eye. Being through my share of eye appointments, I knew this was something that needed immediate attention. I immediately went to Dr. Pautler and was told that my vitreous is detaching. Needless to say we have both agreed to leave it alone since with surgery we would be gambling with total vision loss. I still see star bursts and floaties (annoying), but Dr. Pautler gives me his undivided time and attention during each appointment and says, thankfully, there are no retina tears and the one small Coats vessel remains stable (not leaking).

Obviously my fear (but not my worst) is total blindness. My Aunt will most likely be blind in the next year or two and reminds me that some people deal with much worse. I completely agree. I can happily report that neither of my children (20 and 25), nor my sister’s or cousin’s children, show any signs of “these dang family genes”. I hope the trend continues ☺”

With my boyfriend Joey in St. Augustine (we love that place).

My daughter and I after competing in The Savage 5k Race (mud and obstacles).

Having fun at the 2012 Gasparilla Children’s Parade with my daughter and Grandson.

For more Coats Cases, visit our website or our Facebook page! To submit your own, send us an email.

Source: “Unite for Sight, Inc. – Global Eye Health Statistics”. Jan 4, 2012. http://www.uniteforsight.org/eye_stats.php

Meet Chris Barnes. Coats Disease patient. Athlete. Advocate. And our newest JMCDF Ambassador:

“My story starts at high school soccer practice when I was 15 years old.  We were working on heading drills into the goal and I was missing all the balls that would come to me.  It was really hard to see and I thought it was the sun’s glare but the sun was at my back.

I didn’t say anything about it to anyone, but the guys were starting to think something was wrong since I love headers into the goal and it was what I could do really well.  I went through practice and then my dad picked me up and I told him about the heading problem and he had me close my right eye and tell him what I saw out of the left eye.  This is where I got scared; I said I can’t see anything out of it.  He said stop messing with him, but the truth was that I could not see anything.

My parent’s family friend is an eye doctor so we called him when we got home and told him what was going on.  Since I really could not see anything, he told us to meet him at the office just to make sure things were not bad and needing emergency surgery.

He looked in my eyes and then he looked at great length in my left eye.  He said he wanted to get a specialist into the office to look at it the following morning.  I started to get scared when he told me that.  I have know Dr. Board for many years prior to that day so I felt like he was taking good care of me and wanted to make sure everything was okay. The following day a doctor from Duke University was there to see what was making my sight missing from my left eye.  He looked at my eyes and then talked to my parents regarding what he saw.  There were blood vessels that were leaking in my left eye and the blood was in front of the retina, that is what was causing the blindness in my left eye.His thought, surgery, right then and there.  My family and myself thought it was needed, if something was bleeding, we needed to stop it, right?  The first surgery was the worst.  I sat there with my eyes wide open and starred at a needle that was being put into my eye socket, just below the left eyeball so that the eye could be numb for the first of five laser surgeries that I would go through over the next year.  The surgery was quick, but not painless.  The doctor said that the blood leaking might be from all the soccer that I played growing up… I see now that he had no idea what was going on.  He put me on the sidelines for two weeks from all sports to see if it was from being hit by a ball or from running.Two weeks later, more blood, more questions, which lead my family and I to search for more doctors and more answers.  We found a doctor in Maryland, at John’s Hopkins Hospital who was one of the top eye doctors on the east coast.

After the first visit at John’s Hopkins, we had our questions answered, I had Coats Disease.  Fifteen years old and hearing the news that the blood was blocking my vision and it might be there forever is pretty heavy.  While I was there the first time, I had another surgery then every four months for a year I would go back for more surgery.  The bleeding stopped as more laser surgeries were happening.  I ended up with 5 laser surgeries, scars on my eye, vision loss, but it was not the end of my life.  I was 16 years old, I was able to drive, and I was still playing soccer, some things had to change on the field but soccer is what I wanted to do.

Fast forward to today, I am 29 years old, still have vision loss in my left eye but making something out of it.  I did not let Coats Disease end my sports obsessions.  I played college soccer for a year, I have been a sponsored surfer, I run marathons and ultramarathons, do triathlons and Ironman triathlons, I am a sponsored Gatorade athlete, I am a coach and I am a web designer.  But the one sport that I am most passionate about is guiding visually impaired or blind athletes in marathons or triathlons.  I got involved with an organization called C Different Foundation based out of Houston, Texas.  From there I have met people all over the United States and Canada who guide or need guiding.  This year I was privileged enough to give up my Boston Marathon qualifying time to guide a visually impaired runner named Robbie.

Looking back at the days when I thought things were going to be bad, I was blind in one eye, what was I going to do?  I won’t be able to do anything, I am blind.   What was I thinking?  Everyone has two eyes, one of my eyes got bad, and then the other eye, well the other eye got better and was 20/15 the last time I went to the eye doctor.  So, if you or your child has Coats Disease and you think that they will not be able to live a normal life due to the disease.  Think again, they can, it is up to them, and they can sit back and have a sympathy party or get out there and do what they want to.  I hardly tell people about my eye and what all I have been through.  It is something that I keep to me and don’t want people to look at me differently or think of me as only having eye sight in only one eye.  I hate being treated special so I keep the Coats Disease history to only close friends and family.

I hope that this helps you or your child to see that just because you have Coats Disease, at any stage, you can do what you want and not have anyone hold you back.  It is your life, do what you want and leave nothing left in the “I wish I could” column.”

“I was diagnosed with Coats disease when I was 11 years old. The yearly eye sight and hearing screening at school is who tipped my parents off that something was aloof with my vision. Personally I knew my vision wasn’t great in my left eye but I was so worried about having to wear glasses that I didn’t tell anyone.

Thinking all I needed were glasses my mom setup an appointment with an optometrists. I did the vision test and failed miserably with my left eye. The optometrist immediately started to run tests to figure out why my vision was so terrible, I couldn’t even read the largest single letter on the screen. (technically my eyesight is 20/2100 or legally blind) I was ultimately referred to an Eye doctor specialist at the University of Minnesota (Dr. Knoblauch) but not before the optometrist told my mom it might be a brain tumor. Needless to say I was in the ophthalmologist office ASAP.

After taking one look at my dilated eye Dr. Knoblauch was able to quickly let me and my parents know exactly what was wrong. He also laid out the plan of action including the prognosis, which unfortunately included the fact I’d never regain my lost vision. I had 1 eye surgery and 3 laser treatments to stop the spread of the disease. This was all completed before my 12 birthday. I guarantee my whole diagnosis and treatment was harder on my parents than it ever was on me and I felt bad putting them through all of this.

Fast forward 21 years and I still have a yearly thorough examination but thankfully the disease hasn’t spread. I learned to cope with the lost vision at such a young age that I hardly even notice it today. I do wear eye protection when doing just about anything potentially dangerous, which means I was the basketball playing dork with the goggles but the fear of losing sight in my “good” eye was and is enough incentive for me to do whatever it takes to ensure I keep my good eye healthy.

I’m now happily married and in good overall health and other than the fact I can’t hit a curveball I’ve been able to fill a full and very happy life. I’ll never let losing my vision in one eye stop me from being the person I want to be and doing the things I want to do.  Through the Coats foundation I hope to help other families that are struggling with this terrible disease even if it’s just as a role model to let them know you can and will live a happy life even if you don’t have perfect eyesight.”

5th Annual Charity Golf  Tournament
For The Jack McGovern Coats Disease Foundation

Save the Date!
We Welcome Event Sponsors, Tee Sponsors, Golfers and Shoppers

Come on out, play and raise funds to benefit research for fighting
blindness. Cost is $175 which includes range balls, green fees, cart fees
and prizes. Banquet for golfers, sponsors, supporters and spouses with wine
included following the golf tournament. Auction & Dinner only is $75.

Wednesday August 31st, 2011
Crystal Springs Golf Club
6650 Golf Course Drive, Burlingame
Time & Registration: 11:00 am
Shotgun: 12:30pm
Auction: 4:00pm
Dinner: 5:30pm

Please RSVP to
John Bruno at johnpaulbruno@comcast.net • 415.661.0931
Ed McGovern at ed.mcgovern@yahoo.com • cell: 415.999.4689

Would rather shop than golf? Join us for dinner & auction only.
Come and celebrate our 5th anniversary
and check out our fantastic new SILENT AUCTION!
- Getaways
- Jewelry
- Fashion items
- Art
and much more

The Firm
Pacific Heights
2999 Washington Street, San Francisco, CA 94115

The 2nd Annual “Eye on Fashion” event was a huge success!

Thanks to Claudia Ross and her team at Cross Marketing, all “eyes” were on us as we raised funds and awareness for Coats’ Disease. This debilitating retinal disease affects many young children and adults and our foundation is leading the way to funding research. Within Jack’s lifetime thanks to all of you, we know that he and others will regain their eyesight and stop this disease.  We look forward to this annual event where we can come together, have fun at The Firm (thanks to Nielma Hock) and shop, thank you to Jennifer Tuton and the Podells AND help others.

We raised over $10,000 to directly fund research with no overhead or administrative costs. All funds raised go straight to the leading researcher in the country who is working and sharing his findings with the pediatric retinal specialists around the country. Very exciting!
Thank you thank you thank you.

Press from our 2010 Fashion Event

944.com

Examiner.com, March 27, 2010

Hauteliving.com, April 5, 2010

San Francisco Chronicle, May 16, 2010

SFGate.com, March 30, 2010

Vivanista.com, March 29, 2010

Vivanista.com Calendar

Past Event 2009 - movie by Toam Lam and Allison Tom, photos, 944.com photos
Nielma Hock and The Firm for their assistance and for hosting this event. Lisa Deneffe Photography.

The 4th Annual Jack McGovern Coats’ Disease Foundation Golf Tournament
Tuesday, August 17, 2010 - Save the Date!
Crystal Springs Golf Club
6650 Golf Course Drive, Burlingame

Time & Registration: 11:00am
Shotgun: 12:30pm – Dinner: 5:30pm

Come on out, play and raise funds to benefit research for fighting blindness. Cost is $175 which includes range balls, green fees, cart fees and prizes. Banquet for golfers, sponsors, supporters and spouses with wine included following the golf tournament.

Please click here for the response form and return it to:
Jack McGovern Coats Disease Foundation
c/o The Law Offices of Russell Miller
20 Park Road, Suite E
Burlingame, CA 94010

For general questions contact:
John Bruno at jbruno@dmbinc.com – 650.400.7729
Ed McGovern at ed.mcgovern@yahoo.com – cell: 415.999.4689

Sponsors are welcome!  For more information, please call Ed at 415-999-4689.