Macular disease or stargardt disease, is a rare condition whose onset can occur at anytime. It results in damage to the retina, though most patients do not become completely blind.
This diagnosis is a shock for many patients, because it can occur at any age. For Kay and her daughter Matilda, this was certainly the case. Kay, and other individuals affected by Stargardt disease, share their advice with those new to it below.
Matilda was just 3 and 1/2 when she was diagnosed. Her mother shares her advice on how to cope with the diagnosis and live life with the condition.
The diagnosis was scary and confusing, and she had so many questions about the future. But over time she has learned how to cope, and she now wants to share her findings with others.
First, Kay explains that it’s so important to lean on others for support. This can come from family, friends, and others dealing with the same condition. Kay said that one of the very first things she did was contact The Macular Society.
Kay had struggled to even find information about the pediatric form of the disease. One phone call to this organization made such a difference. They talked for an hour; she gained a plethora of information and felt so much better hearing the advice of an expert. It was reassuring to hear someone with knowledge explain that things were going to turn out okay.
Secondly, its important to do your own research. This advice comes from John Dunston who chairs the Society. His own son was diagnosed with the condition 20 years ago. He explains that with increased knowledge means an improved ability to help your kid and explain to them what is going on in their body.
Thirdly, communicate with other parents of pediatric patients. You can search for a support group on Facebook, or look into the Working Age and Young People page on The Macular Society website. The Society also has a support group for parents, which has a phone meeting once every month. For more information on joining this group, email here.
Fourth, ask questions. The only way you can learn is if you’re not afraid to admit when you don’t know something. Ask your doctor and write things down. Also, don’t be afraid to ask if your doctor doesn’t mention something you’ve found in your own research that you think may help your child. They might not have heard of it yet, but that doesn’t mean it couldn’t be beneficial.
Fifth, its important to get regular eye checks for everyone in your family after one individual is diagnosed. Kelly and two of her kids have the condition. They, and her healthy child, all receive eye exams on a regular basis. That means, at the first sign of eyesight deterioration, they will know.
Sixth, it is so important to be open and honest with yourself and you family about the reality of the disease. Your child should be aware of how their eyesight may change as they age. At the same time, research is ongoing and we are hopeful for new treatments in the future. Don’t lose this hope either.
You can read more of this advice here.