“In October 2018 I was diagnosed with a genetic disorder: Stargardt’s disease. The condition prevents my body from properly producing a certain protein. Without that protein, your eyes cannot properly remove certain harmful substances, which causes these substances to build up. and eventually damage the central part of the retina, causing my vision to deteriorate over time and eventually lead to blindness.
Stargardt’s disease is a hereditary condition. My sister also suffers from it and only found out in 2011. Actually, she has had complaints from the age of four to eighteen, but at eighteen they found out through a blood test that she has Stargardt.
At the moment there is nothing you can do about the condition. For example, glasses make no sense at all. Ultimately, Stargardt patients get a vision of anywhere from five to ten percent. With a vision of five percent, you can only distinguish between day and night. That is ultimately what remains of your view.
It’s hard to deal with because I wake up with it and go to bed with it. I am currently trying to bring the condition to people’s attention with my Instagram page, so that they know what it means and what the long-term effect is. Also because a lot of research is still needed.
They are now also working on that and after years there is finally a bright spot. Doctors at Radboudumc, where I am being treated, among other things, are developing a medicine in which they have a lot of confidence. Once the development of the drug has been completed, it is up to the European Medicines Agency (EMA) to approve the medication, but due to legislation and regulations in Europe, this takes about five to ten years.
Unfortunately, I can’t wait that long, because I suffer from the progressive form of the disease. It must and can be done faster, corona has shown. In addition, the investigations not only cost a lot of time, but also a lot of money. Think of amounts around 30 million euros. If the drug is approved and marketed, it would cost around ten million euros to get the drug administered if it is not reimbursed.
At first I didn’t dare to share my story. It was all still new to me and I wanted to keep it to myself and a small group of people around me, but in the end I thought it was important to share it. 1 in 10,000 people in the Netherlands suffers from Stargardt’s disease and you hardly ever hear about it. That is why I think it is important to discuss Stargardt and I hope that people will donate, so that more research can be done.”
– Lotte (21)
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Thanks for sharing your story, it is very necessary hear some testimonies sometimes about this rare but real disease