FAQ

The severity of the disease varies from person to person. Children can therefore get it in a different form or degree than their father or mother. This can be both worse and better. It's impossible to predict. Environmental factors may play a role in this.

In addition to ADOA, there is also the ADOA-plus syndrome. This disease is also caused by a mutation in the OPA1 gene, but then there are more complaints from different parts of the body. Examples of this are: being hard of hearing, reduced coordination of movements and muscle complaints. In addition to visual impairment, people with ADOA(-plus) may experience fatigue more often.

No, unfortunately there is no treatment and the disease cannot be cured to this day. Due to the rarity of the disease, little research is being done into it. For this reason, the Cure ADOA Foundation is committed to increasing brand awareness and raising money for more research into ADOA. If you want to know how you can help us with this, look in the menu under the heading Support us!

Of course, you don't have to do anything and the choice differs per person and per situation. If you are considering having genetic testing done, you will first have an interview with a clinical geneticist (heredity doctor) in the hospital. This geneticist will tell you what the consequences of the genetic research are and what exactly it entails.

There are also people who choose not to do genetic research, because they already know that ADOA runs in the family. This in combination with associated complaints may be sufficient to make the diagnosis. Genetic research is of course still possible, but not everyone finds this necessary. You can find more information about choosing hereditary research .

It is true that wearing glasses or contact lenses does not reduce the symptoms of ADOA. When you wear glasses, this is because of myopia (- glasses) or farsightedness (+ glasses). Nearsightedness and farsightedness are not consequences of ADOA and are common in the population. When an ADOA patient sees 30% without glasses, but 60% with glasses, this means that the disease causes a vision loss of approximately 40%. Visual acuity, also called visual acuity, is determined after correction by glasses or lenses, or corrected visual acuity.

Yes, there are. Royal Visio en Bartimaeus are organizations that work for blind and partially sighted people. They can help you, for example, with rehabilitation, choosing aids and/or making adjustments at work, supervising school-aged children, keeping or obtaining your driver's license, and so on. There are often still many possibilities. You can also contact the Ooglijn (030 – 294 54 44) of the Eye Association.

There are the following organizations for fellow sufferers with ADOA plus who have hearing problems: Royal Auris group, Royal Kentalis en National information point for deafblindness