Stargardt’s Disease

Emotional Impact: Adolescent years are difficult for every child, but imagine suddenly learning that your vision is failing. The sudden awareness to the child and parents that the child is losing vision can be devastating. The family and the child need to learn immediately about low vision care. Knowledge of the options to help the child can help the family and child put the problem in perspective. Counseling may be needed to help the child through their fears. Support groups or interaction between the parents of other Stargardt’s patients can be beneficial.

On my computer, I use a program called Jaw’s. This software is specifically designed for the visually impaired. It has a voice output system that will read to me as I type or reads my e-mails out loud.

One of my greatest challenges my vision has created for me is the ability to recognize people around me. They are not recognizable and I rely on the sound of their voice to know whom they are. This makes it very difficult to say “hello” to someone I know just a few feet away from me. They assume I can see them and often I am misunderstood as being rude or impolite. So, if you see me on the street or in a local café, please start by introducing yourself, and say “Hi Chris it’s…………” Everyone else might think it strange but I will appreciate it!
Because my peripheral vision is still intact, I continue to get around very well by myself. Personal Health & Fitness has always and continues to lead me through my journey. I am very independent and continue to train everyday, hike the local trails, and do massage therapy.

Having been legally blind for the last 10 years, I have learned to adapt to things that most people take for granted. I focus on my drive and determination to create a comfortable reality for me to live my life and to maintain my independence.

Stargardt’s Disease is a form of macular dystrophy that begins early in life. Dr. Stargardt first described this condition in 1909 giving it its name. The medical name given to this disease is fundus flavimaculatus. It is one of the most common forms of a juvenile macular degeneration. Stargardt’s disease may occur in one of every 20,000 children over the age 6 and is usually diagnosed before the age of 20. Boys and girls are equally affected by this condition. Over 25,000 Americans have Stargardt’s disease.

Stargardt’s is usually a recessive inherited condition requiring the person to receive a gene from each parent to cause the disease. However, there have been a number of cases identified as dominant inheritance, requiring only one gene from either parent. Recently researchers have identified the gene, ABCR, now called abca4, which causes Stargardt’s Disease. This brings hope that a treatment will eventually be available.

With Stargardt’s Disease, the macula and surrounding retina are affected. The macula is the very center of our retina. The images we see are focused on the retina like the film in the camera. Unlike camera film where every part of the film is equally sensitive, our retina concentrates the most sensitive vision in the very center. Additionally, our best color vision resides in the macula. Thus, damage to the macula results in loss of visual acuity or sharpness of vision, decreased color vision and small blind spots.