My Vision & Stargardt's Disease

My Vision & Stargardt's Disease

Everyone, at some time in their life, confronts challenges which test the limits of their abilities, patience, and resolve. Many events such as the loss of a loved one or career, a severe but treatable injury, or financial calamity are overcome; we pick ourselves up and move on. However, sometimes these obstacles become part of our lives and we must find ways to incorporate them into our everyday existence and persevere.

Adolescent years are difficult for every child, but imagine suddenly learning that your vision is failing. The sudden awareness to a child and their parents that the child is losing their vision can be devastating. The family and their child need to learn immediately about low vision care. Knowledge of the options can help a child and the family put the situation in perspective. Counseling may be needed to help everyone cope with their fears & anxiety, and to face the new challenges. Support groups or interaction between parents of other Stargardt’s patients can be beneficial.

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 who 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…………” Others might think it is strange but I will appreciate it!

Because my peripheral vision is still intact, I continue to get around very well by myself. Personal fitness has always, and continues to, lead me through my journey. I am very independent and continue to workout everyday, hike the local trails, ride my bicycle to swim practice, and do massage therapy.

Having been diagnosed with Stargardt’s Disease in 1993 and deemed legally blind in 1997, I have learned to adapt to many things that other people might 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 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.

With all of the many challenges I have faced as a result of my blindess I have a passion and love for life. I remain positive and always find the silver lining in every cloud. Two technological tools which have helped me in my lead a normal life are a program called JAWS which is installed on my laptop. This software is specifically designed for the visually impaired. It has a voice output system that will read to me as I type, view a webpage and read my e-mails aloud. The other is a program which is installed on my mobile device called Mobile Speak which performs just about the same functions. These programs are very instrumental in allowing me to continue leading a very independent life.

By constantly re-inventing myself I have been able to find a comfortable place in life for myself and my loved ones. Today, I live my life by finding the silver-lining in every dark cloud and searching for the positive in everything.