Derek's fundraiser for PoTS UK
Derek Purnell is raising money for PoTS UK
Story
The purpose of this challenge is to raise awareness of ‘PoTS’ and to raise funds to support ‘PoTS UK’. ‘PoTS’ UK support those with this illness and raises awareness of ‘PoTS’ with the public and medical profession.
“This is very close to my heart since watching our granddaughter Kyra (now 19) struggle with this debilitating illness over the past few years. Initially it was not knowing what was happening to her and added to this experiencing the frustration of not getting a diagnosis for two years. It was only through the persistence of our daughter Rachel did she get a diagnosis for her daughter” Derek
Read Kyra’s story in her own words:
“My life was turned upside down in August 2022, when my POTS symptoms got much worse very very fast. I could no longer stand up or walk and had to start using a wheelchair. I was supposed to go to university but couldn’t because I couldn’t function. Had to cancel student loans, student accommodation, quit my job and apply for benefits. I had to sell my concert tickets and became completely isolated from anyone who wasn’t in my immediate family. Being 19 and actively missing out on the years that were supposed to be the best of my life, whilst grieving the life I was planning on having, sucked. I’m still trying to navigate the social aspect of having a pretty new diagnosis of a ‘hard-to-explain’ chronic illness, which I hope more people become aware of.” Kyra.
‘This will be a challenge for me as a 71 year old cancer survivor. The ‘Yorkshire Three Peaks Challenge’ is to reach the summit of each of the peaks all of which are over 2,000ft, covering 24.5 miles in 12hrs. Having done this walk several times when I was much, much younger I know what I am facing. I have a friend from the gym, Andy Birtwistle, who is my ‘minder’ and fellow walker for the day. I have been training since January at the Gym (Y Club, Manchester) where I have been a chaplain for the past 30 years or so.’ Derek
More from Kyra: “My episodes would consist of symptoms including heart palpitations, sweating, violent nausea and dry heaving, violent shaking and convulsing, numb arms and legs, feeling very dizzy with blurry vision and brain fog. this would happen if I stood up for more than maybe 15 seconds, if I ate, if I had a shower. I could no longer stand up or walk and had to start using a wheelchair. I went through a million blood tests, countless ECGs, MRIs, EEGs, tests for epilepsy, being constantly strapped to wires to finally discover the illness I have, and be told there was no cure and no real solution, just to hope to grow out of it.”