I am running Newcastle-Gateshead’s first marathon on 5th May 2024 to raise money for MyAware. They provide invaluable support to those diagnosed with Myasthenia Gravis through sharing a wealth of information, putting those diagnosed in contact with others going through the same journey, and being available for one to one calls offering advice on more practical measures such as disclosing the health condition to work, the DVLA and other bodies. In addition to this, they support research into the different types of Myasthenia. MyAware is the only dedicated charity in the UK supporting those with Myasthenia Gravis.

I was diagnosed with this condition in 2023. For those who don’t know, Myasthenia is a rare and incurable neurological muscle-weakening condition. I am very fortunate that my experience of this disease has been mostly ocular (impacting my vision) and has not been debilitating, however for many this isn’t the case and their day to day lives are severely impacted.

To share a little insight into my world, since diagnosis I have since experienced a range of symptoms including: double vision, fatigue, drooping eyelid, heavy limbs, voice changes when tired and an abnormal sensation when swallowing. Side effects from medications are also often forgotten but can have a big impact on people’s lives. I’ve personally experienced: difficulties sleeping, anxiety, muscle cramps, muscle twitching, upset stomach, increased toilet usage, hair loss, changes to appetite and bloating along with moon-face from fluid retention.

When I was diagnosed I was concerned the muscle-weakening condition would impact my ability to run. Over one year later, I’ve undergone thymectomy surgery and I am in remission. I want to use this opportunity to not only personally achieve running a marathon but to also give back to the charity that has supported me during this time.

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