What if mitochondrial disease is diagnosed?

The doctor will review the result of all the tests with you to confirm the diagnosis of Mitochondrial disease. It may take a few months for these tests and procedures to be scheduled and the results to be ready. You will be informed as soon as possible once the results are available. All test results will be discussed in person during a follow-up visit with your doctor.

Hearing that your child has Mitochondrial disease can be a shock. You may feel scared, sad or angry. All these feelings are normal. You may have mixed emotions and your feelings may change from day to day, even minute to minute.

It will help to have support from your family, friends and health care providers at this time. You may have trouble remembering the information that is shared by your nurse and doctor. Always feel free to ask questions during your care or call your doctor if you have concerns or questions afterwards.

After a diagnosis is made the doctor will likely recommend starting a cocktail of vitamins. You will have time to discuss and think about treatment options before making decisions. The health care team will continue to explain the disease and answer your questions as best as they can.

If you are feeling overwhelmed or alone please contact your specialist’s office. There are supports and services available to you that will help, including those available by contacting MitoCanada on this website. There are also other families affected by Mitochondrial disease who are available to listen and talk with.

Clinic staff will always try to be available to help you work through worries or concerns, but we do not provide emergency services. If you have immediate concerns about your child’s health (such as breathing problems, heart problems or seizures), you should take your child to the nearest hospital emergency room or call 911.

Your child may see many health professionals and it is difficult to keep track of all that is said and done. We encourage you to keep a file about your child’s health. Once a doctor has gone over test results with you in person, ask for a copy for your own records.

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