The pain can be horrendous and I battle with depression, but I have to get through it for my children, explains Fiona Brien

I was diagnosed with systemic sclerosis, Raynaud’s phenomenon, rheumatoid arthritis and underlining lupus in 1982 when I was just nine years old. My parents were told I was the youngest person in Europe to have systemic sclerosis and all the connecting diseases. The doctors said I would never have children, would never work and I wouldn’t live past 30 years.

I have proved them wrong as I have four children, I have worked in the past and I am now 43 years old.

I have lost most of my fingers and both of my thumbs due to ulcers. I have only three full fingers left, one of which is permanently bent at a 90-degree angle. I’ve also had my lower leg and one of my toes amputated.

How have I got through over the years? How do you cope? These are questions I get asked very often. I just have to get on with it. To me this is my norm, this is all I know.

I have a good medical support network. I see my rheumatologist every three months. My GP is fantastic and very understanding. My surgery has a fantastic practice nurse who is simply the best and I’ve been seeing her weekly for over a year now.

Due to having so many finger amputations I do need quite a lot of help with daily living tasks such as dressing. My husband is my carer and he does housework I can’t do and all the cooking as this is a task I struggle with.

Yes, some days are harder than others and the pain can be horrendous. I battle with depression at times but I have to get through it for my kids.

Three of my children have left home and when they were younger I wasn’t as ill as I am now. My youngest daughter is nine years old, and very independent but we do spend lots of quality time together. She loves helping me bless her. Her eldest sister takes her for days out to give her a break and have some fun.

Systemic sclerosis is a difficult disease to live with and is very misunderstood. I feel it’s important for sufferers to tell their story so they don’t feel alone. I also believe that it’s vital to stay as positive as we possibly can.

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