I'M WALKING 35KM TO CURE MITO IN THE BLOODY LONG WALK!

By Cindy Bareham

I'm walking 35km in The Bloody Long Walk to help Australians living with mitochondrial disease. That’s 46,200 steps in one day!

I know I’ll cross the finish line exhausted and blistered, but that’s nothing compared to what people with mitochondrial disease (mito) go through every day of their lives.

Mito robs the body’s cells of energy, causing multiple organ dysfunction or failure. It can affect anyone at any age. Mitochondria are the power houses of the cell providing the body with over 90% of the energy it needs to sustain life. Mitochondria take in sugars and proteins from the food we eat and produce energy called ATP that our bodies use to function properly. Mitochondrial disease (mito) is a debilitating and potentially fatal disease that reduces the ability of the mitochondria to produce this energy. When the mitochondria are not working properly, cells begin to die until eventually whole organ systems fail and the patient’s life itself is compromised. When we think of the symptoms that might present in mitochondrial disease, we need to think of the organ systems that work the hardest and the longest and so require the most energy. Also, the complex specialisation of mitochondria within each cell causes a dizzying array of symptoms that mitochondrial specialists have come to recognise as characteristic of this illness.

Symptoms may be absent in healthy people who have silent genetic defects or can be complex and multiple in a person with advanced disease. Many combinations of symptoms are also possible, even in those people with the same genetic defect!

Therefore, with so many illnesses looking like mitochondrial disease and mitochondrial disease looking like so many illnesses, how do we know which is which?

Firstly, we must suspect mitochondrial disease when:

• a ‘common disease’ has atypical features; and/or

• three or more organ systems are involved; and/or https://event.bloodylongwalk.com.au/ fundraisers/cindybareham/sunshine-coast

• recurrent setbacks or flare-ups occur with infections in a ‘normal’ chronic illness.

The most common symptom is fatigue. This is not the type of fatigue one experiences after a busy day. Rather it feels like ‘hitting the wall’. Often when mitochondria are well rested, a person can achieve what they want and appear ‘normal’. However, in times of excess energy loss, high physical stresses or poor energy input, the person may feel extremely fatigued and often struggles to simply get out of bed.

These energy level fluctuations can make it difficult for a person to present their case to a practitioner. Overall, like most mitochondrial symptoms, the fatigue will progress over time, although at vastly different rates for different people.

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