GENERAL

Mitochondrial disease can not be cured at this moment in time. There are no therapies or medication which can slow down or stop the disease. Treatment of mitochondrial disease is focussed on fighting and alleviating the symptoms and on maximising the opportunities to maintain independency. Treatment is practised symptomatically, in other words the complaints and problems of patients are leading in dealing with the disease. Sometimes this entails the taking of medication, sometimes it involves learning how to cope with it all, sometimes it means making use of practical aids. It is important to monitor the physical condition and to apply adjustments to the daily life as well as possible.

Treatments may differ from patient to patient, depending on the symptoms and the severity of the disease. The benefit of a treatment may be very obvious for the patient, even if there is no hard evidence that a therapy is effective. In such cases the patient’s experience is leading in the treatment. In some cases the patient may not benefit from any therapy at all. Whatever the treatment is it will not reverse the damage already sustained, such as brain malformations.

Patients with mitochondrial disease are advised to attend to a rehabilitation specialist who is familiar with metabolic diseases once or twice a year. The rehabilitation specialist coordinates a team of various professionals who can help and support the patient. A coordinated treatment plan can be developed and managed by the rehabilitation specialist.

POSSIBLE THERAPIES (all of which should be custom-made):

1. there is a standard treatment for some symptoms (eyes, ears, diabetes, epilepsy etc.)
2. physical therapy
3. speech therapy
4. respiratory therapy
5. occupational therapy (ergotherapy)
6. psychological therapy for coping with the disease
7. support by a social worker, i.e. in drawing up a daily programme which is focussed on a balanced use of the limited energy level of the patient
8. use of practical aids (walking aids, hearing aids, breathing aids, wheelchair, stair elevator, mobility scooters etc.)
9. dieting, always based on advice from qualified dieticians, familiar with metabolic diseases
10. taking vitamins and supplements (this is empiric only, no hard evidence, but some patients seem to benefit from Co-enzym Q-10, vitamin A, L-Arginine, Carnitine). Warning: unlimited use of vitamins and supplements may be harmful.
11. avoidance of stressful factors
12. no fasting or prolonged periods of not eating (such as some diets for losing weight)
13. no smoking, no alcohol
14. avoidance of cold (much energy is needed to keep the body warm)

ALTERNATIVES

At this moment there are no alternative treatments or medicines available which are proven to be effective with mitochondrial diseases. Neither are there any to slow down the progression of the disease. There is no scientific evidence for the effectiveness of any alternative treatment. However, sometimes the regular specialists can not help out the patient sufficiently and alternatives may be a solution, especially when it concerns pain. Other symptoms such as fatigue, cold hands and feet, and the general condition of the body, may benefit from alternative treatments. One may think of yoga, acupuncture, homeopathic medicines or the medicinal use of marijuana. It is not sensible to try out things at random, not everything is harmless. If you are looking for advice in this respect, you can contact the national patient organisation or your own physician. It is important to find positive references for alternative treatments, before you start using them.

EXERCISING

It depends on the cause of the mitochondrial disease whether or not physical exercise is a good thing or not. At this moment research is being done into the consequences of physical exercise for patients with mitochondrial disease, but there are no results yet. Probably exercise does not have negative consequences. Often patients are exercising less and less in order to avoid complaints. However, this leads to a decreasing condition of the body. From this point of view, complete rest is undesirable. Usually, patients with mitochondrial disease know very well when the exercise feels good, and when it has been too much. Some do not experience any benefit from exercise.

Anyone can start exercising immediately. Yet, for mitochondrial patients the programme for exercising has to be built up very slowly. And it is always necessary to ‘listen’ to the body because over-exercising or overburdening of the muscles can be harmful. Coaching by a physical therapist, familiar with mitochondrial disease, is advised. When walking is still possible, but extremely tiring, practical aids such as wheelchairs are useful. The patient can use them from time to time, but also walk little distances and as such is getting the necessary exercise.

OTHER MEDICATION

Some medicines have a negative influence on the disease. It is important for patients to know these medicines because physicians are not always well informed about this. It involves the following:

1. Certain anti-epilepsy medicines, with valproine acid, such as Depakine and Natriumvalproate drink.
2. Certain antibiotics, with aminoglycosides, such as Amikacine and Gentamicine.
3. NRTI'’s, medication used for treating HIV/AIDS, can lead to a serious increase of lactateacidosis.
4. Certain anaesthesia medication.

Please see our page 'List of Medicinces to be Used with Caution' for a more detailed list