What can we expect in years to come?

This is an important question, but one that is not easy to answer. So much depends on the type of Mitochondrial disease and what parts of the body are affected.

We do know that the majority of people with Mitochondrial disease live for years with their disease well managed and their life expectancy unaltered.

However, there is no doubt that your child’s diagnosis of a Mitochondrial disease has a significant impact on you and your family. The effects can be:

  • physical
  • emotional
  • social
  • spiritual
  • financial

Many parents change their jobs because their child needs more time, attention and visits to the doctor and various specialists. As they grow and mature, children with Mitochondrial disease may need to change their life goals, if the disease limits what they can do.

Please talk with your health care team and discuss the options that are available to you. It is not always necessary to change your plans for education, employment and family. We can give you information, support and guidance so that you can make decisions and choices that are right for you and your family’s future.

We are sad to say that the prognosis for children who are severely affected by Mitochondrial disease is poor. Mutations such as Leigh’s disease and Lethal Infantile Mitochondrial Disease (LIMD) are very severe. Children whose hearts are affected at an early age may develop a thickening of the walls of the heart (called cardiomyopathy) which shortens their life. These children often do not live past the age of 16.

Adults who are diagnosed with adult-onset Mitochondrial Disease face a different set of challenges, from loss of income due to disability, requiring additional care and support, additional medical costs, and other concerns.

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