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Hello! As I have a new found love for swimming this year I have decided to do a sponsored 3k swim in December for MyAware, a charity that supports a very rare autoimmune condition called Myasthenia Gravis. Please find time to read the below as it is very important to me!

This charity is particularly close to my heart as Myasthenia Gravis is something I was diagnosed with 2 years ago. In October 2014 I spent some time in hospital after waking up with double vision. After a lot of tests and scans I was given a 99% diagnosis of Myasthenia Gravis. Following 6 months of further tests and scans, against the odds they could not find laboratory evidence meaning I could be officially 'undiagnosed' and although still not totally resolved, my vision gradually improved without continuing medication. 

During this 6 month period my family and I were advised to educate ourselves on Myasthenia Gravis, a condition that before then we had never heard of. Needless to say over those 6 months coming to terms with a disease like this was incredibly heartbreaking for me and those around me. Here are some facts about Myasthenia -

• MG is neurological and affects the brain getting signals to the nerves telling the muscles to move. 
  
• Myasthenia Gravis is an extremely rare condition that affects around 1 in 100,000 people. 
• Because MG is so rare there is still so much we don't know about it and funding for research is limited. We don’t know why it happens and there is currently no cure.
• It is a chronic condition but can be managed with medication like muscle strengtheners and immune suppressants such as steroids. It is also managed through rest. Although medication is very effective, they can have all sorts of side affects for long term use (and from first hand experience they’re not pleasant!!). 
• MG is also known as 'snowflake disease' as no two cases are the same. Each case varies with each person from mild to severe. Milder cases cause symptoms isolated to the eyes (like I experienced) and is usually how myasthenia starts. This is known as Ocular Myasthenia Gravis and causes problems with moving your eyes and eyelids (double vision and droopy eyelids). I was told there was around an 85% chance that Ocular Myasthenia would then progress into General Myasthenia, which can affect other voluntary muscles such as face muscles, speech, swallowing, respiratory functions and arm and leg movement. The different stages and types of myasthenia mean some people can lead very normal and active lives where as others can find it extremely debilitating.
• MyAware is currently the only charity supporting people with Myasthenia Gravis. They are a very small organisation and they are not government funded.

I had severe double vision for around 6 months in total and although this would be classed as a 'mild' symptom, it was still extremely difficult and frustrating to live with day to day. This was a huge insight into what someone with Myasthenia Gravis experiences. I adjusted to life with one eye covered for this time but other people live with this for years. As you can imagine being diagnosed with a disease that affects 1 in 100,000 can be extremely isolating. I was fortunate enough to make contact with other people and families dealing with the condition and it was humbling to be able to empathise even an ounce of what someone living with MG goes through. 

After being given the all clear, a large part of me has wanted to forget that Myasthenia Gravis even exists as it was a pretty traumatic time. However, there are still people out there dealing with the emotional and physical difficulties and uncertainty of a Myasthenia Gravis diagnosis. It is extremely hard to diagnose (hence why it took them 6 months) so any funding towards finding ways of diagnosing it quicker would be amazing, with the long-term goal obviously being finding a cure! If you have taken the time to read this even your awareness definitely now makes a difference!

So as I cannot think of anything worse than running some sort of marathon I will instead be swimming as this is something I can actually do! Please give whatever you can as it ALL helps and I am so grateful! THANKS!