Living with Mitochondrial damage

What happens when mitochondria are damaged?

When mitochondria fail, less and less energy is generated within the cell. Eventually, cell injury and even cell death follow. If this process is repeated on a large scale throughout the body, whole systems begin to fail. The life of the affected person is compromised, changed, or even ended. [1]

Mitochondrial disease primarily affects brain, heart and muscle in varying levels of severity.  This is overlaid by good and bad days caused by significant inconsistency- like the electricity flickering in different areas of a community. [2]

 

A brief animation created by MitoAction. Explains how mitochondria work and what happens to those of us with mitochondrial disorders.

 

 

WHAT ARE SOME OF THE CHALLENGES AND FRUSTRATIONS OF LIVING WITH MITOCHONDRIAL DISEASE?

Because mitochondrial disease is often ‘invisible’, the biggest challenge the patient faces is convincing the doctor there is something wrong. There is a medical void that currently exists regarding this illness, partly due to the illusive nature of the illness and partly due to it being relatively new.

If a diagnosis is not established it can be difficult for a patient to obtain adequate medical care, healthcare supports and disability services. This can contribute to a progression of symptoms and a risk of inappropriate treatments and management.

Mitochondrial disease affects not only the person with the illness but carers and family as well. So carers and family may even be in need of their own support, support they might have to continuously fight for given the poor education about this disease.

Mitochondrial disease can be unpredictable, day to day and hour to hour. On good days a person with the illness can appear normal so its severity is often doubted. On bad days the person can be extremely ill, making it difficult to return to the original baseline.

Mitochondrial symptoms are very often atypical and bizarre and challenge even the best specialist to ‘think outside of the box’. Standard medical tests may not give a complete picture of what is actually happening.

All of these factors can make it difficult to get through a ‘normal day’. The AMDF is currently building a collection of resources, including articles, lifestyle advice and details on community and allied health services that can assist people with these daily challenges, big and small.  Thank you to the Austrailian Mitochondrial Disease Foundation for this explaination.

 

From mitoaction:
  • Affects multiple organs, affects multiple family members, affects multiple generations.
  • Lack of awareness and understanding of the disease
  • Families are continuously forces to expend their very limited energy to explain their disease, advocate for themselves and fight for services.
  • Mitochondrial disease is often an ” invisible disease.”
      • Good day – patients look fine and healthy. They have more energy and appear rested.
      • Bad day – – patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated “bad days”often lead to decompensation and patients have difficulty returning to baseline.
  • Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.
  • Difficulties establishing a diagnosis interfere with a patient’s ability to obtain adequate recognition, medical care, adequate insurance coverage, healthcare supports and disability services.
  • Lack of understanding of the disease and misinterpretation of symptoms can lead to misdiagnosis. Further progression of symptoms can occur if the symptoms are missed and opportunities for treatment and support are not recognized.

Thank you MitoAction for this explaination

 

 

Citations
[1] United Mitochondrial Disease Foundation, “MitoFirst Handbook,”http://www.umdf.org/atf/cf/%7B28038C4C-02EE-4AD0-9DB5-D23E9D9F4D45%7D/MITO%20FIRST.pdf
[2] Foundation for Mitochondrial Medicine, “What Happens To You When You Get It?,” http://mitochondrialdiseases.org/mitochondrial-disease/

 

One thought on “Living with Mitochondrial damage

  1. AliJoyce says:

    Hey Micheal!

    I had an adverse drug reaction to flagyl and I’ve been declining for 2.5 years. I suspected mitochondrial disease but had an evaluation and testing done at a specilized metabolic clinic and they found no deletions or mutations. Did you actually get any test results that showed mito damage for you or is your diagnosis just based on the fact that FQs damage mitochondrial DNA?

    Like

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