I am a Mom of 3 adult children who have Stargardts. My children were diganosed between the ages of 14 through 19. All of them have had different paths to follow as well as what the Stargardts experience is for a parent of children who have this diagnosis.
In 1990 when my daughter was first diagnosed, we were living in a very small town in the upper Penninsula of Michigan. The doctors thought she had MS or possibly a brain tumor and then diagnosed her with “hysterical blindness” and recommended counseling for stress reduction. She finally told me she had worked on every problem she felt she ever had and the biggest problem was actually having someone think you are causing your own blindness !! We finally got a diagnosis of Stargartds after almost 2 years. At that time we found out it was genetic and had our son rtested. He was 14 and not affected yet but we were told he did have it also. My oldest child is a daughter I had to give up for adoption but have since been reunited with. She was diagnosed at the age of 16 but did not have a name for the macular degeneration she had as being Stargargtds until she met me and was told of her sister and brother’s diagnosis.
Reading the stories on this website has been bittersweet. My children and I have gone through so many of the same things that have been shared here. I would just like to give as much hope as possible to those who are struggling with this. Of course, even though there are many similarities of experiences each person’s challenges and blessings are different. I would like to especially speak to several of the young people who both have Stargardts and their loved one’s who are standing by to help in any way they can while they are hurting so much for the ones they love. I have watched all three of my children find their way in this world. I have told them they can pretty much have a life like anyone else but they just have to go at it in a different way that it sometimes has a slower result. I had one older fellow in his 50’s tell me he was his own worst enemy over the years and once he just relaxed and quit worrying about what everyone else thought was differnt about him, he did much better. He said he thinks of all of the things he uses to manage his life easier as tools just like any one else uses a hammer to hammer a nail. Everybody uses tools and some of them are just different than others. My son, for instance, has a small hand-held viewer that he uses to read his blue prints at work. They also have talking tape measures for carpentry and computer programs that do so many things to mak life and work a possiblilty. What can’t be made .. can be given and that is hope and understanding.
I was reading here about a young man who discovered his Stargartds after a racing car accident and how overwhelmed he is. My son especially has gone through a lot of this type of struggle. He is now married and has more confidence than I ever believed he would. If I can share anything with anyone that might be of some help, I would be happy to or if you just need to talk, that’s fine too. I will mention this website to my kids. I am so glad it is here for all of us!
UPDATE – March 10, 2006
Hello again everyone,
I have had e-mails from a few of you so I hope to keep up with answering any questions anyone might with to ask about my family’s experience with Stargardt’s. I am surprised that it can still be so difficult to get a diagnosis even today. I was told that it is not considered that uncommon as far as genetic eye disorders are concerned but I know from people’s experiences it is still not that easily recognized. One question I would like to ask is if anyone can share any experiences where there has been any job discrimination going on in their lives. This is an issue especially for my son who works for a company that builds roof trusses. Everything was fine but the company was just recently bought out by another owner and the new management has made him feel uncomfortable. I wish that it was enough for people to just have to adjust to the vision loss instead of the unfortunate problem of being constantly worried about losing a job as well. Thanks for letting me vent a bit. It’s hard to let go of the anger and disappointment in some of these cases. Let me know if anyone has had a similar experience.
Martina…..Mom of Aimee, Shawna and Arthur