20 year old Siofra lives in Northern Ireland, and has recently been diagnosed with a rare illness. She recently started sharing her journey on Twitter, and hopes to raise awareness of the condition, and help others who are also struggling. Here’s a little piece she wrote for us…
My name is Siofra and I’m 20 years old. After over five lengthy years I’ve finally been diagnosed! I started to experience pains in my right shoulder and arm which bugged me and later found a small lump under my arm. I saw my doctor who told me there was nothing to worry about. Since that I was with the doctor constantly looking answers. I was treated for a severe case of frozen shoulder and received injections and many physio appointments which just left me worse off. I was also on a lot of medication which had its own effects on me too. I was studying for GCSEs and Alevels at the time it all kicked off and it was so frustrating trying to study while in so much pain. I got my 10 GCSEs and 3 Alevels and took a year out hoping that I would get better in that year. Little did I know it hadn’t even begun.
I started a foundation degree and after my first year I was still no further on until this year I saw a lovely surgeon who knew there was something more than a frozen shoulder wrong. I got many more scans and luckily for me someone picked up on an ‘abnormality’ on the very edge of the scan so I was called back. I received a biopsy which was horrendous as it was difficult to get at. From here I’ve been diagnosed with a Desmoid tumour otherwise known as Fibromatosis. I am trying my best to study but it is so difficult as I am in a lot of pain and due to being up all night I’m tired too. I have got my own cancer nurse (even though I don’t have cancer) who is so lovely.
I hope to start treatment in February. Until then, I’m on many medications and using a heat pack to try get some ease from the pain. I have amazing support from my family and friends and a great boyfriend. That’s all I need! Plenty of love and smiles to help me fight on!
The entire team at Shona sends love and light to Siofra, and will be thinking of her over the course of her treatment x