I will be participating in the 25K South Coast Challenge on September 3rd to raise awareness and funds for Rare Disease UK.

I have had a rare neurological disease,  Glossopharyngeal Neuralgia (GPN), since 2018. GPN falls under a group of conditions that cause facial pain so extreme that they are also known as the “Suicide Disease”. Due to my pain, I am unable to live the “normal” life of someone in their 20s and have had to completely reconsider my plans for the future. For me, a lack of outward symptoms conceals the intense pain experienced due to talking, a step on a hard pavement, and sitting, amongst many other things. So while 25K may not seem like a lot, as someone who can feel pain from the impact of taking a step, this will definitely be a huge challenge for me! 

While I have access to basic treatment options to make my symptoms more tolerable, many others with rare diseases are not as lucky. 

Rare diseases affect 1 in 17 people in the UK and each year, 6,000 children are born with diseases so rare that they do not even have a name, let alone treatment options. Rare Disease UK is a national campaign that aims to increase the profile of rare diseases in the UK. The campaign works with health providers to improve the quality of life for individuals and families affected by rare diseases.

Your contribution will not only fund life changing medical research but also improve access to treatments and raise awareness of those with rare diseases. 

Thank you so much for visiting my JustGiving Page. I am truly grateful for your support. 

Let’s #careforrare! 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.