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๐‘ฉ๐’†๐’•๐’•๐’†๐’“ ๐’…๐’‚๐’š๐’” ๐’‚๐’“๐’† ๐’„๐’๐’Ž๐’Š๐’๐’ˆ...

I'm Sammy, a creative beauty business owner, a fiancรฉe and a mummy! However my main job role these days is a patient...


The beginning


Unfortunately, after having the Covid vaccine, not only my life but my family's life, changed drastically - I became very unwell very quickly and had a seizure. The seizures become more frequent, daily in fact. This lead to Epilepsy.


Then in August 2022 I became very weak and, after a blood test with my GP, which came back critical I spent the next 6 weeks in hospital. This was when various consultants, including my neurologist, began running tests and my whole world was turned upside down as I entered the world of "Rare diseases and Auto-immune disorders".



Diagnosis


So far I've been diagnosed with Vasovagal Syncope, Erythromelalgia and Polymyositis - I've had various tests and investigations including a skin biopsy but my journey with rare diseases has only just begun.


Impact


My mobility has been reduced massively, this is because my body is attacking all my muscles and tissue, leaving me with very little strength. I'm on a lot of medication to mask the pain, help with my mobility and aid rest and sleep. However, I feel drained all the time and struggle doing a lot of day-to-day activities - which is heart-breaking with having a young family. My partner has become my carer even though he still works full time and my son has had to adapt to the changes. He's been amazing though.


Hope

My boys always say to me that "Better Days" by Dermott Kennedy reminds them of me and I have to remember when I'm feeling down, that "Better Days are Coming" .


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