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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!

You can read more about Siofra’s condition here.
You can follow Siofra through her treatment at twitter onĀ @siofrasjourney

The entire team at Shona sends love and light to Siofra, and will be thinking of her over the course of her treatment x