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3 years ago I was diagnosed with a debilitating auto-immune disease - Myasthenia Gravis. Myasthenia Gravis is a rare muscle disease with no cure. In 2013-2014, I found it hard to walk, run, brush my hair, get out of bed, fasten my bra strap, hold onto things or even smile. It consumed my life and my thoughts every day. Since being diagnosed, I have been in and out of hospital, put on drips, put on lots of drugs with horrible side effects – weight gain, bruising etc. People with Myasthenia are characterised by fluctuating muscle weakness and everyday activities, taken for granted by most of us, which can become difficult or even impossible for people with Myasthenia. 

I still live with this disease every single day, the symptoms and the side effects. It is always on my mind and I’m always worried when the symptoms are going to hit. My life activities have changed because of Myasthenia but I do not let it stop me, living my life to the fullest and have completed a degree in Culinary arts and am now completing my masters in Applied Culinary Nutrition.  Last year i was registered to complete the marathon in June of 2016, but unfortunately ended up in hospital with my appendix so was unable to attend the marathon. I'm hoping nothing will stop me completing it this year!

Myasthenia is rare, hard to diagnose and lacks awareness. It is only diagnosed in 3 - 30 people per million a year. As its a rare disease, i feel more awareness needs to be established to prevent delays in diagnosis and support individuals and families, maybe even developing a cure!!! 

Myaware is the only charity working to support people with Myasthenia by increasing awareness of this rare disease, providing support to people with Myasthenia and their families as well as raising funds for research. Recent research has resulted in more understanding and better management of the disease but there is still no cure. By raising money for Myaware, a cure maybe established, helping the lives of so many.  

Thank you so much for your support!

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