Story
Thanks for taking the time to visit my JustGiving page.
On Friday 13th July 2018 I was diagnosed with an extremely rare vascular sarcoma called Epithelioid Hemangioendothelioma (EHE). As EHE is so rare there is not much knowledge around the disease, treatments or cures. Medical professionals are continuously trying to gather vital data worldwide from patients with EHE to understand this disease and try and find new treatments.
EHE is unpredictable, it can be indolent (slow growing) and some patients will have no symptoms for years. But EHE tumors can grow rapidly even after long periods of dormancy.
My Journey so far has been a mixture of emotions not only for myself but for my family and friends. So far I know I have EHE in my Liver, I have had a PET Scan and will be having an another MRI in October. I will then be going back to Birmingham to meet with the specialists to find out if I have EHE anywhere else within my body or if my tumors have grown or changed.
I wanted to start a just giving page as a starting line for myself in fundraising for EHE, my goal is to get fitter and continue my fundraising around the UK by doing physical challenges. The reason I want to fundraise for EHE is not only for myself but for all of the amazing inspirational people I have already met and lost in my journey with EHE. But also to raise awareness for this Vascular Sarcoma. Being a Rare Disease also means EHE does not receive a great deal of support from bigger charities and this is my way of trying to contribute to new opportunities in research for treatments and hopefully one day a cure.
I am extremely lucky to have such an amazing support system around me, not only my family and friends but also the EHE society that have taken me in to be part of their family. Thank you for taking the time to read my page and as they say 'every penny helps'.
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