Frequently asked questions
Heredity
ADOA is a hereditary disease, so there's a chance your children will also develop ADOA. The chance that your child(ren) will also inherit the faulty gene is 50%. In approximately 95% of these cases, this actually manifests as the disease. It's a dominant disease, meaning that one faulty gene is enough. With this form of inheritance, your gender or that of your child(ren) has no influence on the risk of developing ADOA. It's possible to prevent future children from developing the disease. You can read more about this on this page.
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.
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 here.
Lifestyle, diet and medication
Yes, smoking and excessive alcohol consumption have a negative impact. Tobacco smoke and alcohol cause extra stress (oxidative stress) on the cell's energy factories (the mitochondria). Because these are already vulnerable in ADOA, doctors strongly advise against smoking and drinking alcohol to avoid putting extra strain on your eyes.
There is currently no scientific evidence that supplements or vitamins can stop or reverse ADOA. Therefore, taking supplements long-term is generally not advised, unless a doctor has diagnosed a specific deficiency. An exception to this is vitamin D drops during the winter months, which can be a useful supplement.
Our Medical Advisory Board recommends focusing primarily on wholesome nutrition according to the Food Pyramid:
- Eat a varied and antioxidant-rich diet. Regularly choose vegetables (at multiple times a day), blueberries, green tea, dark chocolate, and nuts.
- Important building blocks for the eyes. Lutein and zeaxanthin help protect your eyes. You can find them in spinach, kale, broccoli, Brussels sprouts, bell peppers, and egg yolks, among other things.
- Omega-3. Ensure you get enough omega-3 from (wild-caught) fatty fish. If you do not get this from your diet, consider a high-quality supplement.
Always consult your treating physician before using specific supplements (such as CoQ10).
For more detailed advice, also read our page with lifestyle tips.
In addition to nutrition, there are a number of lifestyle recommendations from the Medical Advisory Board that can support your body and energy factories (mitochondria):
- Get enough exercise. Physical exercise stimulates your body to produce new mitochondria.
- Strive for a stable blood sugar level and get some rest. Fluctuating blood sugar levels require extra energy. In addition, take sufficient rest and recovery periods to prevent overexertion.
- Seek out daylight, but protect your eyes. Morning light supports a healthy sleep-wake rhythm. However, always protect your eyes extra well against UV radiation during the day (for example, with good sunglasses), because the eyes are more vulnerable with ADOA.
View the complete overview on our page with lifestyle tips.
Yes, some medications can suppress the function of mitochondria (the energy factories in the cell). Therefore, always inform a doctor, specialist, or pharmacist that you have a mitochondrial disorder (ADOA) so that they can take this into account.
On our download page You will find an overview of safe and unsafe medication for mitochondrial disorders, available in various languages.
Important: Never stop taking prescribed medication on your own initiative. If in doubt or if you have questions about its use, always consult the doctor who prescribed the medication first.
Symptoms and course of the disease
In addition to ADOA, there is also ADOA-plus syndrome. This disease is also caused by a mutation in the OPA1 gene, but it involves more symptoms affecting various parts of the body. Examples include hearing loss, impaired coordination of movements, and muscle complaints. Besides poor vision, people with ADOA(-plus) may experience fatigue more frequently.
Some people are bothered little by ADOA, while others become almost completely blind. This varies from person to person and also within the same family.
Most people do not become completely blind. ADOA primarily affects central vision, making it more difficult to read details, recognize faces, and see colors. Peripheral vision (side vision) remains intact in most people. As a result, you can usually continue to move around a room or on the street perfectly well.
Symptoms usually begin at a young age, within the first ten years. Because the vision loss is very gradual and children adapt quickly, it is not always immediately noticeable. As a result, the diagnosis is not made until adulthood in some people.
Poor vision consumes an enormous amount of energy unnoticed. Your brain has to work extra hard all day long to process the blurry images. This mental and physical fatigue is a common complaint in ADOA. It helps to manage your energy well, take breaks on time, use the right aids, and, if necessary, seek guidance.
Treatment and aids
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!
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.
If new studies start that patients can participate in, we will announce this via our social media, the news page and our newsletter, which we send out once a quarter.
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Would you like to stay informed about the latest developments regarding scientific research into ADOA(-plus)? Then check out the page. The road to treatmentWe post regular updates here.
Practical issues
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.
That depends on the quality of your vision. The CBR sets strict requirements regarding your visual acuity and field of vision. If your visual acuity is lower than 0,5 (50%) or your horizontal field of vision is smaller than 120 degrees, you are formally no longer allowed to drive a car.
If this is the case for you, it does not necessarily mean that driving is permanently impossible. Your ophthalmologist can refer you to Koninklijke Visio for the Auto-Mobility programThey are investigating whether it might still be possible to drive safely with special telescopic glasses (BTS).
Curious how this works in practice? Read the story of Kirsten Smit, who drives a BTS despite her visual impairment.
Women's health
Scientifically speaking, there is still insufficient evidence for this. Estrogen helps protect the cell's energy factories (the mitochondria). Because estrogen levels drop during menopause, researchers suspect that this *could* play a role. However, there is too little hard evidence to state that the course of the disease in ADOA actually changes as a result.
Hormone therapy (HRT) is therefore not a treatment for ADOA. Women are prescribed this for menopausal symptoms, such as fatigue and hot flashes. If you feel less tired due to this therapy, you may sometimes perceive your appearance as more pleasant or 'better'. However, that is an indirect effect of feeling better. HRT does not inhibit or cure the condition itself.
