My name is Jason Hoover. I have a good life – a wife, two small daughters, a good job and a love for riding motorcycles. When I was diagnosed with keratoconus I started to worry that at the age of 32 I could lose my vision, end up on permanent disability, not be able to support my wife, Katie and our two young daughters, Kara & Kendal, and never ride again.
My story began in 2004 when my local optical office told me they would not be able to correct my vision, gave me glasses and referred me to an ophthalmologist. He made the diagnosis and that day “keratoconus” became a big part of my life. I was told very little about the disease – just that it was caused by rubbing my eyes too much as a child with allergies. I was given a pair of gas-permeable contact lenses and told that much later in life I would need a cornea transplant and sent on my way.
I struggled for two years trying to get used to the hard contact lenses and eventually just gave up. But a year later when my vision got worse, I tried again. Putting them in was the most painful thing I have ever had to do. It would take an hour after putting them in until my eyes stopped watering and burning. Throughout the day, I would have to deal with them popping out of my eye, getting dirt under them, losing them, headaches and all the misery that came with wearing them.
In early 2012, my vision began deteriorating very rapidly. For the past four years, driving had been my primary occupation, and I was an outside salesperson before that. My double (sometimes triple) vision began to get worse, and headlights were severely elongated and smeared. I began to feel extremely uncomfortable behind the wheel of the delivery truck. I had gotten two corneal eye infections within a matter of two months, and my local optical office detected scar tissue and cornea ulcers in addition to a significant change in my vision. I was ultimately referred to a keratoconus specialist, Dr. Roy Rubinfeld at Washington Eye Physicians & Surgeons in Chevy Chase, Maryland.
Dr. Rubinfeld determined my best corrected vision was 20/200 in my right eye and 20/70 in my left eye, and that I was in the later stages of keratoconus. He predicted I would be forced out of my hard contacts in the very near future. He said a cornea transplant would be a very last resort. He told my wife, Katie, and me about corneal crosslinking (CXL) and the CXL/USA Study but said the condition of my eyes was poor enough that CXL alone would not be enough. He recommended an additional surgery, conductive keratoplasty (CK). He said the CXL would stop the progression of my disease, and the CK procedure could restore some of my lost vision. This was an answered prayer for us! However, the wind blew out of our sails when we heard the procedures would cost $7,500 and that the procedure was not covered by insurance because it had not yet been FDA–approved. We are a young couple with two young daughters, ages 3 & 5, who do not have deep pockets or a significant savings account. We thought there was no way that we would be able to come up with that kind of money. We couldn’t set a date for surgery at that time; we had a lot of thinking and discussing to do.
My wife has marketing and fundraising experience, so her mind was racing. Who could she contact? Who could we turn to? How would we do this? Should we reach out to others in the community? Would that draw negative attention to our family? Would it embarrass our children? Should we try to do something anonymously? How in the world would we be able to do this? But we had to do something I couldn’t bear the thought of losing my vision, not seeing my girls grow up and not being able to ride my motorcycle.
I belong to the Williamsport Red Men Tribe No. 84. , a local club, and I am a member of the motorcycle club, the Red Men Riders, which is part of that organization. The Riders do many fundraisers to help various nonprofit organizations as well as others in need. My wife and I were always drawn to participating in these types of events and helping others – we just never dreamed we would be the ones asking for help. At the club’s monthly meeting, my wife read a letter explaining what was happening to my vision and what we needed. Then we left the meeting. Going public with my problem was a very big step for us. We waited anxiously and just half-hour later, the president of the Red Men Rider Club told us the club had voted unanimously to provide half the cost of the surgery and would do a benefit motorcycle-ride fundraiser to try to raise the rest. Any extra money raised would be donated to the National Keratoconus Foundation (NKCF).
The fundraiser took place on Sept. 22, 2012, with AC&T Co. (a local petroleum company with stores and truck stops in our area) as the lead sponsor. Approximately 100 bikers showed up to participate, many we didn’t even know! It took our breath away to watch all those people who had opened their hearts to our family and our cause. After the benefit ride, all riders, families, friends and guests were invited back to the Williamsport Red Men for a hog-roast meal, gambling and live music, donated by Dave’s Carolina BBQ, The Jagged Edge Band and High Noon Band. Everyone had a wonderful time. At the end of the night, they announced we had raised nearly $5,600. My wife and I just hugged each other and cried. After the Riders’ own donation and paying expenses, we had the $7500 I needed and were also able to donate $1,138 to the National Keratoconus Foundation. The very next week I called to schedule my surgeries!
When we arrived at the office on Oct. 10, Dr. Rubinfeld answered all our questions, explained the upcoming procedures in detail and calmed our fears. All through the process, Dr. Rubinfeld and his office staff were greatly supportive of my family and me, which was invaluable. My surgery went well and, on Nov. 30, Dr Susan Gromacki fit me with scleral lenses. They were comfortable and I had 20/20 vision in my left eye and 20/30 in my right eye and no distortions. It’s the best vision of my life, by far!
To celebrate, I just did my first bike ride: a Veteran-Support Ride on the Harley!