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THE MACULAR
DEGENERATION COMMUNITY

Lesley
(Pam's son)

photo

Name
Lesley Roberts

Born
Jan 11, 1986

Home
McAlester, Oklahoma

Diagnosis
Stargardt's disease

Eyes Affected
Both

Eye Color
Hazel

Age at Diagnosis
17

Visual Acuity
20/200

Treatment
Started Dr. Nolan's ECHO drops November 9,2003. Vision went from 20/200 to 20/30. (See below for a newspaper article about my experience.)

Prognosis or Current State of Vision
Diagnosed in August 2003 with vision at 20/200. After starting the ECHO drops, near vision is now 20/25, but distant vision is still 20/200.

Family History
No known Family history or any eye diseases.

Impact on My Life
It was devastating at first, and I have really struggled in the first semester of my senior year of high school. I could not read the books, papers, computers, or boards in the classrooms. My parents had just helped me buy a brand new Ford truck, and I was looking at having to stop driving in my near future. I LOVE my truck. I did not want any of the kids at school to know, afraid they would shun me like I had the plague. But once they found out, they all rallied around me and have been so supportive. My goal in life before being diagnosed with SD was to either Race NASCAR or to at least be a part of a NASCAR Team. My dad races locally, and it's always been a big part of our lives. But the doctors and vocational rehabilitation councelors tell me I need to find a new goal.

Positive Effects
It has brought me closer to my church and God. I was baptized. It has made me REALLY want to live life to the FULLEST! I do not have time to be depressed. I want to go and see and do ALL that I can while I can still see to do so.

I love my Mom and Dad and Grandpa and even my little sister very much, and the rest of our family, and we have so much FUN together. And we travel alot with the race car, and we really enjoy life. I can play basketball and hit the basket again, and I can catch a football again, thanks to the ECHO drops.

Adaptations
Allowing other to help me when I couldn't read something. Learning to adapt to low vision. A year ago, when someone threw me a football, I would set up to catch it. Then just before it got to me, I would dodge it, because I would lose it from sight just before it got to me.


Here is an article about me from our local newspaper:

Treatment stems blindness
By Susan Woolsey
McAlester News-Capital & Democrat
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      KREBS, OKLAHOMA - Les Roberts woke his father up when he began screaming, "Dad, I can read the Cheez-It box!"

      The red and orange box was all the way across the rented hotel room. Before that morning it would have been impossible for the young man to read the largest letters on the box even if it had been right in front of him. To read them from across the room meant there had been a big change in Les' eyesight.

      For years Les had been slowly going blind, everything straight ahead of his eyes blurry, sometimes completely black. Colors had faded so much he didn't realize that traffic lights really are "red, yellow and green," his mother, Pam Roberts, said. "He had been living with low vision for so long that he didn't realize it had gotten so bad. He just accepted it" as the way the world actually looked.

      But then Les began having a very hard time seeing and the prescription on his contacts was changed and then changed again. It didn't help.

      His world was slowly darkening and it looked like infection had set up in his eyes.

      That was when Pam Roberts went online to find out what was happening to her son.

      She found the answer at www.mdsupport.org. Les had Stargardt's disease, also known as juvenile macular degeneration. It's an extremely rare disease that always affects both eyes.

      For a 17-year-old high school senior who wants to design race cars, that news meant changing everything from his career options to who gets to drive and who rides shotgun. But in the end Les didn't have to change anything.

      His mother read online about a doctor in Connecticut who was treating Stargardt's with Echothiophate Iodide - medicated drops that have been used for years on patients with glaucoma. The Roberts family decided to go to Connecticut and try the experimental treatment.

      "The drops have been used for years on people with glaucoma. Dr. Gerard Nolan discovered that at low doses the retina responds to it, and blood flow to the eye is increased," Pam Roberts said. "You've got to have good blood flow to your eyes because if you don't it makes your brain think it doesn't have to send blood to that area and everything continues to deteriorate."

      Using the drops for Stargardt's has not been approved by the Food and Drug Administration yet, Pam Roberts said, which is one reason why they asked the community for financial help in saving Les' sight. Pie suppers, pool tournaments and garage sales helped bring in money. The Solomon Lodge No. 32 of Krebs matched the funds raised at one of the pie suppers and in November the Roberts traveled to Connecticut.

      "Before he started the drops Les was legally blind at 20/200," his mother said. "After the second dose of medication he was able to read the 20/30 line. That is nearly perfect."

      Now Les uses the drops twice a week. He can see fine now, well enough that his parents are trusting him to drive their 1937 Ford to the prom in a few more months. His vision - color, near, night and distance - is right on par.

      Because Stargardt's is so rare Pam Roberts said that anyone who would like more information about her son's eye condition and the treatment the family chose can email her at breeezeee37@yahoo.com.