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Girl Scout writes about Keratoconus

The following was written by members of the Wayland Girl Scout Troop #3178:

Last spring, Wayland Girl Scout Troop #3178 visited the Boston Foundation for Sight in Needham as part of their Bronze Award community service project. After months preparing and learning about the foundation’s work and studying journalism, the fifth-graders were lucky enough to have an insider’s view of the foundation and to meet with the staff and several patients to conduct interviews.

The troop members are Abi Agoos, Courtney Bolivar, Hannah Brigham, Paige Gould, Sarah Kaye, Bar Kinreich, Julia Lavenson, Regan McLaughlin, Kira Palmer, Melissa Sax, Natalie Shear and Kruti Vora. Troop leaders are Nancy Gould, Barbara Krause and Cynthia Lavenson. Lavenson was a longtime board member of the foundation.

The Boston Foundation for Sight is a nonprofit dedicated to helping children and adults who suffer from various types of corneal illness or disease, regardless of their ability to pay.  Founded by Dr. Perry Rosenthal, the treatment involves custom-fitting a special contact lens which serves as a liquid bandage, relieving eye pain and enhancing vision.

Cyndee Williams of Dexter, Mo., is one patient who was interviewed by the Girl Scouts. She is a stay-at-home mom, and she and her husband have two young children. She was blind which was difficult. She has been diagnosed with “keratoconus,” a disease that thins the cornea, which is the clear, dome-shaped surface on the front of the eye.

After a frightening experience with her son running off from the backyard, Williams decided she needed to find help. She learned of the Boston Foundation for Sight from “The Oprah Winfrey Show.” Dr. Perry Rosenthal, MD, a Harvard ophthalmologist, appeared on “Oprah” to talk about the “scleral” lens he invented. This lens was able to help people like Williams to see again.

Williams had been suffering with the disease for eight years. She also has two cousins with the same disease. One cousin had a successful corneal transplant, but Williams didn’t want the transplant because it can be dangerous and not always successful.

The Foundation for Sight collects donations for help people who need it, and Williams’ lenses were free. After she got the lenses she was so happy she wanted to hug the doctor. “I could see everything!” she said. She told us she was the most excited to see her husband and kids again. She said the lenses do not hurt to wear and took about three days to learn how to put in and take out each day. Williams has to come back once a year to have the lenses checked.

The troop also met another patient named Ellen Kelly of Santa Barbara, Calif. Because of her leukemia and lymphoma she had a bone marrow transplant. Often with a bone marrow transplant the new blood cells attack the cells of the cornea in addition to fighting the cancer. Kelly was in terrible pain because she suffered from extreme dry eye. When her doctor told her about the foundation she was so nervous she was not able to make the call for four months. “I kept putting it off,” she said.

When she finally came to the foundation she found out all the workers and doctors were very nice. The doctors fitted her with special lenses, and the pain stopped as soon as the lenses were put in. When we met Kelly she had just been fitted with the lenses and was learning how to put them in and take them out, and how to clean them several times a day.

Kelly is a children’s book writer so the lenses make her work much easier. “Because this problem affects people’s lives so much, it’s so great these people can help,” she explained.

Lynette Johns is an optometrist who works at the Boston Foundation for Sight and treats almost 30 patients a week. She has been working there for about a year and loves her job because she feels good about helping other people.

After college she attended optometry school for four years. Then she began to work as a resident and that’s how she found out about the Boston Foundation for Sight. There are many patients and success stories she remembers. One person that Johns has treated was blind and now she is able to see! Another patient got married after coming for treatment and is now the mother of six! Johns is a great optometrist who loves her job and her patients.

We also met with Steve Corlett who works in the lens lab at the Boston Foundation for Sight. He had a person in training, learning how to work the special machines. These machines make custom fitted eye lenses for individuals.

At the foundation, they use a special machine called lathe. It has sharp diamonds for cutting the quarter-sized piece of oxygen permeable plastic to make the lenses. They use diamonds because they are hard enough to cut the tough material. One of the great things about these lenses is that they don’t hurt, as the lenses only touch the white part of the eye which is not very sensitive.

The executive director of the Boston Foundation for Sight is Mark Cohen. The creator of these miracle lenses is Dr. Perry Rosenthal. They are great people working to help others.

“Since the lenses can be very expensive, the BFS will pay if you can’t afford it. That is why this nice organization needs donations,” observed one of the Girl Scouts.