Back in 2018, when my mum suddenly lost her hearing overnight without much cause or explanation, my sister was curious to explore what might have happened. There were commonalities and symptoms in our family such as diabetes, poor hearing and others which seemed unexplained.

Through research, referrals and testing at the Newcastle Mitochondrial Trust, we discovered that as a family we have a type of Mitochondrial disease which is maternally inherited and is caused by genetic errors (mutations) in genes found within the nuclear DNA. 

Mitochondrial disease, or 'mito', is the term given to a group of medical disorders caused by mutations in mitochondria, the tiny organelles that are present in nearly every cell in our bodies and which generate about 90% of the energy we need to live. Cells cannot function properly without healthy mitochondria, so when they fail the consequences can be serious and wide-ranging.

Mitochondrial diseases affect people in multiple ways, depending on which cells are affected. This can make the condition hard to diagnose, as symptoms often resemble those of other serious illnesses. For example, a person with mitochondrial disease may suffer from seizures, fatigue, vision and hearing loss, cognitive disabilities, respiratory problems or poor growth. Any of the body's organs and systems can be affected including the brain, heart, lungs, gut, liver and skin.

Although mitochondrial disease is very rare, symptoms vary hugely depending on the actual syndrome or underlying genetic mutation that has caused it. 

There is currently no cure for mitochondrial disease. However, important steps have been made to make diagnosis faster, easier and less invasive to the patient, and some promising research into effective treatments is underway. The more we learn about mitochondrial disease the closer we will be to one day finding a cure.

So this September I will be taking part in The Great North Run as part of Team Lily and will be running for every one of those affected or suffer from diseases in which mitochondrial dysfunction is believed to be involved. 

This disease is debilitating, there is no cure and in many instances lives are cut far too short. 

As the UK's leading charity dedicated to fighting mitochondrial disease, their mission is to support people whose lives are affected by the condition, raise awareness and fund research into its prevention, diagnosis and treatment. The Lily Foundation's aim is to one day find a cure for mito. 

So please donate if you can. Thanks, Jess x