With everything that has been going on Ben and I have talked about getting involved, about making sure that more people know the signs of Congenital or Pediatric Glaucoma. That there are less parents like us that are told for years not to worry about a high IOP until it is almost too late. Thank goodness that we are still in the "almost" stage. I hope that we never go beyond that. This week is World Glaucoma Week. The feed on my facebook led me to The National Alliance for Eye and Vision Research where I was given the opportunity to share our story in the hopes that those personal stories will make their way to D.C. Below is what I shared. I also emailed my representatives. It was a form letter. But it is a start. It is the beginning of a whole lot of noise that I plan to make about Congenital Glaucoma for the rest of my life.
I feel almost unworthy of sharing our story as so much of it is yet unwritten. However, I REALLY want our lawmakers to understand the difference they can make in supporting and funding research in this field. My daughter recently turned 10. From the time she was very young I always noticed that her left eye was larger than her right. I mentioned it time and again to our pediatrician, a man who I have a tremendous amount of respect for and trust in. Each time my concern was dismissed. After all, arms are different lengths, our bodies are not exactly symmetrical and so on. Besides, she showed no signs of vision loss.
When she was in Kindergarten she started to complain that she couldn't see the board, so we took her in for her first eye exam. At the age of 6 she was given a corrective pair of lenses for both eyes. My husband recalls that the optometrist said her IOP was high, but that was normal with kids who are fidgety and blink a lot. We thought nothing of it. About 18 months later she lost her glasses. She was staying with my mom (her grandma) at the time who noticed that her left eye was acting lazy. She tried patching her right eye to help force the left eye to focus and that is when it became clear that something was wrong. She could not see and was feeling her way around the house. When my husband and I returned to town we took her to the optometrist the next day. The office we went to said they had a new way to look at a person's eye and that it would only cost $15 extra. On a whim we said yes and then everything changed. Based on the picture the optometrist was very concerned and felt that she had Optic Nerve Atrophy in her left eye and we were directed to see a specialist ASAP.
We made the appt. which led to 2 MRIs and a final diagnosis of Optic Nerve Atrophy due to possible birth defect. In the write up the specialist specifically ruled out glaucoma stating the damage was too severe. No tests were performed on her right eye at that time.
A year later she had another regular eye exam. Again, the pressure in her right eye was high, but we were told not to worry, that accurate readings were hard to get on children. Then this past Feb. it was time for her next regular check up. In she went, but this time the doctor said it wasn't normal and that we needed to worry.
In the past six weeks since her regular check up we have had 4 visits with the glaucoma specialist. She has been diagnosed with Congenital Glaucoma in both eyes. The damage that has been done in her left eye is irreparable and there is already some field of vision loss in her right eye. Her IOP at her first appt. was 40. After 15 days of twice a day drops we have gotten it down to 23, it remains at 40 in her left eye. She will have her first surgery this summer. She will be on drops for the rest of her life and she may have other surgeries in her future.
Again, she is 10. We were also told that her diagnosis is years and years too late. That if any one of the previous doctors we had seen had a better understanding and greater knowledge of Congenital Glaucoma that we could have saved more of her vision. We have been told that because she is already blind in her left eye, with the extent of the damage in her right eye, she could go blind. I know that there are cures and treatments that are out there, either in their earliest stages of development or already on their way toward clinical trials. I know that the science and technology that are available to us today can work modern day miracles if only we give them the funding and support they deserve. Preserving, repairing, and one day curing vision loss due to glaucoma will change lives. You can change my daughter's life. It is my greatest hope that our lawmakers will see the need for this type of research and that a cure will be in our near future.
