Frequently asked questions

What are the chances of my children getting ADOA if I have it?
ADOA is a hereditary disease, which is why there is a chance that your children will also get ADOA. It is a dominant disease, which means that the mutated gene of one parent is enough and therefore the chance your child(ren) will also get the mutated gene is 50%. In about 95% of these cases this is actually expressed in the disease. With this form of inheritance, the gender of you or your child(ren) has no influence on the chance of getting ADOA. In some countries there is the possibility to exclude future children from having the disease with preimplantation genetic diagnosis.

If my kids inherit ADOA, will the impact of the disease be the same for them?
The severity of the disease varies from person to person. Therefore, children may get it in a different form or degree then their father or mother. This can be either worse or better. It’s unpredictable. Environmental factors may play a role also in the severity of the complaints.

Do I need to do hereditary research (= genetic research)?
Of course you don’t have to do anything and the choice varies per person and per situation. If you are considering genetic testing, you will first have a consultation with a clinical geneticist (hereditary doctor) in the hospital. This geneticist will tell you what the consequences of the genetic testing are and what it entails exactly.

There are also people who choose not to do genetic research because they already know that ADOA is in the family. This in combination with matching symptoms may be sufficient to make the diagnosis. Genetic research can of course still be done, but not everyone thinks this is necessary. More information about heredity  can be found here.

It is said that glasses or contact lenses do not help, but still I see better with one of those. How is this possible?
Wearing glasses or contact lenses does not reduce the symptoms of ADOA. When you wear glasses, it is because of myopia (- glasses) or farsightedness (+ glasses). Myopia and far-sightedness are not consequences of ADOA. Those conditions are common in the population. When an ADOA patient without glasses sees 30%, but with glasses 60%, this means that the disease causes a loss of vision of approx. 40%. The vision, also called visual acuity, is determined after correction by glasses or lenses, i.e. the corrected vision.

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