Based in Cumbernauld, North Lanarkshire
Hello, I’m Susan and I live with my husband Mark and our daughter Emily in Cumbernauld, Scotland. My story shows the long road to a diagnosis that people often have with mito ...
Throughout my childhood it seemed everyone found physical activity easier than me. From not being able to keep my arms up in Highland Dance class to struggling with PE … I pushed against tiredness much of the time.
At 11 after frequent infections and respiratory issues, asthma was diagnosed and I was given steroids and inhalers. But I never had the classic ‘wheeze’.
My friend and I contracted Glandular Fever at 17.
She bounced back, I didn’t.
I was told it was post-viral fatigue and given ‘graded exercise’ which didn’t help at all. Determined to live as normally as possible, I went to Caledonian University in Glasgow to study International Travel with Languages. Out with friends, I started collapsing – my legs just ‘giving way’. Endocrinology testing needed to rule out insulinoma – a pancreatic tumour. A 72-hour fast saw me have such a severe reaction that it was halted. Postprandial hypoglycemia – abnormally low blood sugar after eating – was diagnosed instead and eating small amounts regularly advised. However, by mid-third year I was sleeping half the day and just unable to cope.
My GP knew that there was clearly more going on and referred me to Cardiology. Heart tests were normal and I was informed that it could be psychosomatic – something I created in my mind. I was relieved on the one hand but frustrated and upset on the other.
However, subsequent exercise testing showed up respiratory problems. This was thankfully a turning point. My lungs were normal – but my lactate levels were so high on exertion that they tested again, to verify it. Mitochondrial disease was suspected for the first time and a muscle biopsy showed a strong indication I had it.
It took around 2 years for genetic testing to confirm I have a rare genetic mutation
similar to MELAS.
MELAS is a common variant of mito, but mine was the only known case in the world of this different form. I was referred to Newcastle and really glad to be in the hands of specialists who understood the condition, at last.
By the age of 25 I was advised to use a wheelchair when out and about to conserve energy. Determined to lead as normal a life as possible I resisted this … and often ended up in hospital as a result. After that, I gradually began to accept that a wheelchair could enable an active life, not restrict it.
I met Mark in 2012 and we quickly became a couple. Starting a family would need a 3-year plan for special IVF to avoid passing on my mitochondrial DNA mutation and surrogacy because my health wouldn’t support a safe pregnancy. However, during this process, I conceived naturally unexpectedly which presented a huge dilemma. We decided to carry on despite the risks. Mysteriously, I actually blossomed during pregnancy and had our gorgeous daughter, Emily in 2016 by planned c-section.
Just days later I had a massive ‘mito crash’
and ended up staying in hospital for 8 days.
Bringing up Emily has lived up to the adage, ‘it takes a village’. I’ve had lots of help to manage the physical side of parenthood and my mum’s been an absolute godsend.
Our wedding in 2019 was awesome. I needed my wheelchair in amongst, but had my first dances with Mark and my Dad without it. There wasn’t a dry eye in the room.
I’ve managed to work pretty much throughout my adulthood despite the health challenges mito brings. Having reduced to part time before the pandemic, home working’s now enabled me to go back to full time in a role that I love with Limitless Technology.
Above all, I’m determined to live my best life around this illness. Although I have mito – mito definitely doesn’t have me.
Thanks for reading my story.
My mission is to raise more awareness
and some funds for research.
As well as general mito awareness, I’d love everyone to know more about occasional wheelchair use. Some people need a wheelchair for reasons other than leg problems!
I’m also really keen to promote the importance of mito research for everyone, not just those with mitochondrial disease. More mito research could help conditions such as cancer, Parkinson’s, long covid… and many more.
Susan's Mito Mission
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