Living with a rare eye disease
In the Netherlands, there are approximately 100 children with the eye disease ADOA or ADOA-plus. They have impaired vision due to a defect in their optic nerve. Unfortunately, there is no cure yet to stop this disease, but there are aids that make daily life easier. Understanding also helps. That is why it is good if as many people as possible know what it is like to live with ADOA. On this page, you can read about this and discover what you can do to help.
ADOA in brief
What is ADOA?
ADOA is a rare hereditary eye disease in which the optic nerve is slowly damaged. As a result, signals from the eye are transmitted less effectively to the brain, and vision deteriorates. The severity varies from person to person. In the Netherlands, approximately 600 people have ADOA.
What is ADOA-plus?
ADOA-plus is a form of ADOA in which people develop additional symptoms alongside visual impairment. These include reduced strength in the arms or legs, balance problems, hearing loss, or double vision. Approximately one in five people with ADOA has this more extensive form.
How do you get ADOA?
ADOA is hereditary and is caused by a defect in a gene. You do not contract the disease through infection and cannot simply develop it. If one of the parents has ADOA, each child has a 50% chance of getting it as well.
Is there a medicine for ADOA?
No, at this moment there is no medicine that can cure ADOA. Doctors cannot stop the disease, but they can monitor the symptoms and offer support. Research is being conducted worldwide into possible treatments for the future.
Can I do something to help?
Absolutely! A lot of money is needed to conduct research into ADOA and ADOA-plus. You can participate in our deposit return campaign or raise money in other ways and donate it to the Cure Adoa Foundation. It is also important that as many people as possible know what ADOA and ADOA-plus are. So perhaps ADOA is a good topic for your presentation or research project?
Presentation or research project about ADOA?
There I am in the schoolyard,
Someone waves to me
But who can that be?
You come closer!
From that distance I don't see who you are,
I might guess
You're definitely not a guy
I recognize that by your long hair,
I wave and you come running,
Ha! It's Karen!
Stories and interviews
