How We Can Help
Mitochondrial Disorders Treatment Information
IU Health Medical Genetics works with physicians, geneticists, counselors and therapists to deliver holistic care that may include specific dietary supplements, medicines, and speech and physical therapies. These treatments will not reverse the disease process, but they can improve some of the symptoms you or your child may be experiencing.
- Genetic counseling. After genetic testing is completed, you may meet with a genetic counselor to discuss the test results. Our genetic counselors are affiliated with Riley Hospital for Children at IU Health and the IU School of Medicine Division of Clinical and Biochemical Genetics. A counselor explains your specific condition, the recurrence risk for other family members and generalized treatments. You may meet with the counselor at a genetics clinic.
- Additional testing. To get a clearer picture of your specific condition, your doctor may order:
- Magnetic resonance imaging (MRI) of your brain
- Heart tests (electrocardiogram and echocardiogram)
- Vision and hearing exams
- Neurologic evaluations
- Blood tests (metabolic testing and/or specific mitochondrial disease testing)
- Muscle biopsy (to see how well your mitochondria are making energy)
- Nutrition. A registered dietitian experienced in metabolic disorders recommends proper calorie intake and amounts of fat and iron you need to function and remain healthy. Because your body cannot make the energy it requires, you should avoid fasting.
- Supplements and vitamins. Patients with mitochondrial disorders often benefit from supplements and vitamins including coenzyme Q10, carnitine and riboflavin, substances whose presence normally allows for proper energy formation. Your physician may recommend these supplements to improve your body’s ability to make energy and slow the progression of your disease.
- Avoid physiologic stress. Abnormalities of temperature regulation are fairly common in individuals with mitochondrial disorders. You should avoid exposure to cold, as severe heat loss may result. Cover all exposed body parts when you go out into the cold. You also may not be able to sweat normally. To avoid heat exhaustion and heat stroke on hot days, dress lightly and consider staying indoors in an air-conditioned environment.
- Disease management. The management of mitochondrial disease is largely supportive and may also include diagnosis and treatment of other related diseases such as:
- Developmental delays. Given the frequent muscle and neurologic involvement in patients with mitochondrial disorders, developmental delays are very common. These developmental issues can range from mild with mastery of skills only a bit later than normal to severe in which affected individuals never attain basic motor or intellectual skills.
- Gastrointestinal issues. Many patients with mitochondrial disorders have slow motility in their GI tract resulting in vomiting rarely and constipation in most individuals.
- Cardiac dysfunction. Some patients present primarily with cardiomyopathy, poor heart function, as their primary symptom. On other occasions, cardiac dysfunction is a complication in a patient with multi-system involvement.
- Epilepsy. Seizures may be a symptom of your mitochondrial disorder. Anti-convulsion medicines can reduce the frequency of seizures.
- Muscular dystrophy. Some forms of muscular dystrophy are caused by mitochondrial disorders. You may be eligible for services from the Muscular Dystrophy Association.
- Occupational therapy. You may need assistance in learning or maintaining certain skills of daily living, such as getting dressed, bathing and eating.
- Physical therapy. You need to build strength in your bones and muscles to learn and maintain motor skills.
- Speech therapy. You learn techniques to improve and maintain your verbal communication skills.
- Clinical social workers. These professionals are vital to managing your care. Social workers help you access the services you need.
Mitochondrial Disorders Locations & Physicians
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Mitochondrial Disorders Support Services
Learn more about mitochondrial disorders treatments at these websites:
A Sampling of Mitochondrial Disorders Support Services
Genetics Home Reference
This is the U.S. National Library of Medicine’s website for consumer information about genetic conditions such as mitochondrial disorders.
Indiana University School of Medicine Department of Medical and Molecular Genetics
This division of IU School of Medicine provides online resources for conditions related to mitochondrial disorders.
United Mitochondrial Disease Foundation
This nonprofit entity is devoted to research and education about mitochondrial disorders, as well as helping individuals and families live with their condition.
Muscular Dystrophy Association.
This international nonprofit is a leader in seeking research and treatments for muscle diseases cause by mitochondrial disorders.
Eunice Kennedy Shriver National Institute of Child Health and Human Development
This division of the National Institutes of Health offers information on the signs, diagnosis, treatment and clinical trials for muscular dystrophy.
Centers for Disease Control and Prevention
This government agency offers information about mitochondrial disorders and their relationship to autism.