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Living with Fabry

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This Fabry Awareness Month, we are featuring a range of articles from guest bloggers describing their relationship with Fabry disease. This week, we have Jack Harris, who lives with Fabry disease.

I was diagnosed when I was just a 1 year old. I was the youngest child to start treatment at about 18 months. As I had always had treatment and all my siblings and mum had treatment too I just thought it was normal. I had always been unwell with vomiting issues, pain crisis, no sweating, headaches etc, but still just thought because we all suffered in similar ways it was just the way it was.

When I was 13 I had an awful careers day at school, the career lady told me I could never do what I wanted to do which was join the navy, because I was unwell and having treatment. She said that none of the forces would want me! From then on really, I realised my disease would impact my future. I then realised I was actually ill and found it hard to come to terms with knowing how much it does affect my life.

But I’m 18 now, I work part time and am doing music and performance at college. I try hard to find things in my life that bring me joy. My family are very close and are always here for me.

As we all have Fabry disease we can totally understand how difficult it can be. We have each other and who knows what my life will bring. I wanted to start the year on a high and thought I could raise money for the MPS Society who have helped us over the years, so thought I’d do a sponsored hair dye! To date I have raised £470.00. Thank you to everyone involved who help supported me.

Jack


If you feel moved by Jack's story please share it and help to raise awareness of Fabry disease and what life with Fabry disease is like.

If you need any help or support living your life with Fabry disease please contact Donna, our Support and Advocacy Officer dedicated to supporting people with Fabry disease.

You can read more about Fabry disease and support we offer here.


Fabry Matters Conference 2024

1 Mar, 15:00 – 3 Mar 2024, 12:00

Join us in this ground-breaking approach to Fabry collaboration for the benefit of our community.

See the full event details for more information and registration.

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