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Ressources for Patients Living with a Mitochondrial Disease

  • MitoAction
    • I found that it was one of the most informative websites on mitochondrial dysfunction. You’ll find information on diagnosis and care, and how it is living day-to-day with a mitochondrial disease. There are some really useful tips, for example on how to deal with heat intolerance, or how to travel.
    • Here is some particularly useful information I found:
      • Guidelines for medical professionals from the Mitochondrial Medicine Society Guidelines: https://www.mitoaction.org/diagnosis/mms-guidelines/
        • Although those guidelines are intended for healthcare professionals, it is worth taking a look at. For example, in the first document ‘Diagnosis and management of mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society’, you’ll find quite useful ‘Consensus recommendations for exercise’ on page 8. In the second document ‘Patient care standards for primary mitochondrial disease: a consensus statement from the Mitochondrial Medicine Society’ on page 7 at the top, you’ll find a list of drugs that should be used with caution for patients with mitochondrial diseases. (There’s also a more ‘user-friendly’ list here: https://www.mitoaction.org/medicationsafety/) I suggest distributing a copy of the guidelines to your healthcare team, especially if it includes a general practitioner that might not be an expert on mitochondrial diseases.
      • A sick protocol if your doctor hasn’t already prepared one for you already:
        • https://www.mitoaction.org/protocol/
        • The sick protocol comprises a vomiting protocol, a fever & infection protocol, and an IV Fluid & Surgery Protocol. If you get to the emergency, however, the difficult part lies in making sure that the nurse at the triage takes a look at the protocol, and transmits it to the doctor taking charge of you (which is not always easy, unfortunately).
      • The Mito Expert Series: Some really nice informative podcasts on mitochondrial diseases, covering new research to information on symptom management. You can download them on your smartphone and take a walk while listening to them, it goes by the name ‘Monthly Expert Series’. You can learn so much without wasting time if you listen to them while you commute or do your dishes.
      • If you need one-on-one support and communicate with someone who understands you, you can talk to a volunteer: https://www.mitoaction.org/programs-support/support/mito411/ You can also email a volunteer if that works better for you. You’re not alone.
      • MitoAction Mobile: A great app to help you manage your symptoms, and treatments to see what works, coordinate your appointments, add your past and future labs, and many more. It’s free! https://www.mitoaction.org/mobile_new/
  • Resources for LC-FAOD (long-chain fatty acid oxidation disorders):
    • Ressources for patients: https://www.faodinfocus.com/
      • The website was made by Ultragenyx, the company that developed the first approved drug for LC-FAOD: Dojolvi. What I found particularly useful was the resources available for download. Those were created taking into account the valuable input from families dealing with LC-FAOD. They cover topics such as learning how to build a support network, how to communicate with your healthcare providers, and how to share your story with others.
      • The site also contains links to some informative support and advocacy organizations.
        • Ultragenyx also created its own patient advocacy site, where you can find new patient stories, resources, and advocacy events or research opportunities https://ultrarareadvocacy.com/
    • Resources for healthcare professionals: https://www.faodinfocus.com/hcp/

There are many more resources, but these are the ones that I found the most useful and that are specifically targeted at mitochondrial diseases.