Jamie's Disability

I have a very rare disorder called DeMorser's Syndrome. It is also called Septo Optic Dysplasia. It affects the optic nerves in the eyes as well as many other organs in the body. It is present, as is the visual impairment, from birth. I am legally blind. My visual acuity is counts fingers from about four feet away in the left eye and 20/300 in my right eye. I really only use the right eye to see because my left eye is so weak my brain tunes it out completely. With my right eye, I can see colors, shapes, and movement. I am very nearsighted and my distance vision is very poor but I can read large print at close distances and smaller print, but with a significant increase in fatigue.

My pituitary gland, as well as other body organs including my optic nerves, is small and underdeveloped. I am on hormone therapy because my pituitary didn't produce any of the hormones needed for normal adult development. I also take a daily adult dose of human growth hormone through injections because my body does not produce it either.

I suffer from migraines, although these have gotten better in recent months. I also have mild asthma and use inhalers when needed. I also take allergy shots on a monthly basis. My thyroid is also affected so I take meds for that as well as for heart palpitations, which run in my family. I have a very mild case of arthritis in my left knee. I had an operation on it in college to get rid of some loose cartilage.

I have a lot going on compared to most healthy adults my age, but I am very blessed that all of my medical conditions are controllable with meds and that I have learned alternative techniques (Braille and cane travel, etc) that make my blindness no big deal. If anything I consider it a blessing I was born the way I was. It has helped me reach out to people and dispel the myth that blind people are helpless and dependent on others and aren't able to participate fully in society.