- Posted August 25, 2014 by
Save My Sight
I came across a story of a young man who has a corneal disease called Keratoconus (KC). I became curious and did research and discovered it is not a rare disease. It occours in 1 out of every 2000 person is the general population. Here is what the young man has to say about his sight and the disease.
I am 21 years old. I love The Lord. I love music with all my heart—writing, reading, playing—you name it. I enjoy experiencing the beauty in the world, and in people. I also have a corneal disease called Keratoconus (KC).
Haven't heard of it? Me either, until I visited James Boyland, O.D., at Halpern Eye Care in February.
KC is an uncommon eye disease that causes the cornea to thin and bulge out in a conical shape and causes one's vision to be highly distorted. There is currently no known cause and cure for the truly life-changing disease. (2008 Survey on QoL with KC)
There are a handful of methods used to treat KC, depending on the severity. For me, I am not at a point where I'd need a corneal transplant (which I am terrified of because of the drastic routine changes post-op) so I have been given Rigid Gas Permeable (RGP) Lenses. I have been wearing the lenses, which my Health Insurance covered only part of because of the rarity of KC. However, with my busy and active lifestyle, they have honestly been a great pain...More physical then metaphorical.
My eye doctor had recommended a more permanent treatment for my case. It's called Corneal Collagen Cross-Linking (CXL). Since the procedure is undergoing Phase 1 FDA Clinical trials, it is not yet covered by insurance.
I am raising $5,000.00 for the procedure to be done at Wills Eye Hospital in PA. Each eye is $3,000.00. That is my first goal. My second is to raise awareness of the disease, and to raise funds to research to find the cause and a cure so other people who suffer from it can have hope for more permanent treatment.
Remember how I said I love feel good moments? Well, here's what I challenge you to do to spread word about KC and to encourage others. Say hello to the "Compliment. EXperience Love" Movement. It's fun, inspirational, and heartwarming.
There are 4 easy steps to participate:
1) Get an index card or scrap paper and write #CXLMovement down on one side.
2) Write encouraging words on the other side.
3) Find a stranger (C'mon. Say hi to that person walking next to you in Target!) and give them said card and said encouragement.
4) Document the encounter, or post-encounter on video and post to social media using #CXLMovement.
4.5) Select five of your friends to do the same. They now have 24 hours to Move and donate. Raise KC awareness!
I encourage you to partake in multiple instances of lifting someone up. Living is tough, but it is worth it, and we could all use more feel-good moments. Feel free post a link to your videos in a comment on here!
Thank you so very, very much for reading my story, my vision (no pun intended), and getting to know more about me. I know great things will come from my KC journey, as well as one sharing love. There is nothing greater.
God bless you all.
V. Brandon Hillard
P.S. If you are the praying type, please keep me in your prayers. If you are not, gimme whatever you got. It's all priceless.
P.P.S. Any, and all exceeding funds will be donated by me to the Wills Eye Hospital and the National Keratoconus Foundation.
I think this is very awesome what he is doing. Not only is he raising money for his procedure, but he is raising money for the foundation as well as raising awareness. When I read through his page I can feel his passion and how sincere he is. If you can find it in your heart to give, then do so, and help spread the word and awareness.