August 6, 1956
Originally Stargardt's, then changed to cone/rod dystrophy.
Blue/Green/Gray--depending on the day
Age at Diagnosis
15 years for the Stargardt's, and 30 for the cone/rod
20/600 - 20/800 without Echo drops; with drops 20/200-20/400 (near and distance vision)
Vitamins, nutrition, Echo drops.
Prognosis or Current State of
Unknown. I lost a lot of vision
during the pregnancy of my youngest child. I am fairly stable now.
I have two other siblings with this disorder and one
brother without. I have been told that I had a great uncle with "tunnel
vision" (RP). Other than this account, there is no history of vision
loss in my family. I was the last of the siblings to get the disorder
and have lost the most vision, although my brother and sister report
recent deterioration in their vision. I am also the oldest child in my
Impact on My Life
I have had a lot of time to get used to my condition. I donŐt drive or read regular print. I have found it uncomfortable having to anticipate signing forms, finding restrooms, locating offices or store entrances etc. The loss of eye contact and self reliance has been the most difficult.
I have learned what I am made of! I have found a strength that I didnŐt know existed. I have been able to rely on God more completely, thus benefiting from the ensuing strength. I have found that the direct and honest approach with others and myself regarding my limitations has been the most successful! I see people from the inside not the outside. I have learned that my value and worth is not determined by how well my body functions!
I have a CCTV for filling out papers, checks, paying bills etc. I have a 20Ó monitor and software programs: Zoom Text, JAWS (screen reader), and Open Book Unbound) scanner based text to voice software). I listen to books on tape and have recently purchased a laptop to give me portability.
I am a Homemaker. I taught developmentally disabled children after graduating from college with a BS in Special Education and Rehabilitation. I hope to finish my MA in counseling someday. I team teach a class for women on Biblical mentoring and spiritual formation. I work with women individually as well. I love to write and have recently begun the process of publishing my poetry.
More About Me
As mentioned above, I love to write (mostly poetry), sing, bicycle (I ride a tandem with my husband), hike, swim, run, travel, and best of all be my husbandŐs wife and my childrenŐs Mom. I believe strongly in God and consider it a privilege to serve my Lord Jesus Christ. My husbandŐs name is Wayne. He is an electrical engineer and is an incredible wood worker and an all around handyman. We have 2 children, Meaghan- born in 1981, who is married and soon to be graduating with a teaching degree. Her husband, Adam, is a Health Underwriter and a joy to have as a son-in-law. Our son Andrew, born in 1994, is still at home, attends school, plays the drums in the school band and enjoys photography and outdoor activities.