Una’s story: “I’ve had to be my own advocate”

Ahead of Rare Disease Day, we’re publishing a number of blogs from people with RAIRDs.

Una Gillespie, 41, was diagnosed with Diffuse Scleroderma and Raynaud’s in 2015. The condition attacks the connective tissue in the body, turning it hard, and also attacks organs in the body. In Una’s case, it particularly impacts her lungs and hands and causes painful digital ulcers under the skin in the tips of her fingers and when they burst they leave her very prone to infection. The Raynaud’s is a secondary part of the condition which results in cold feet and hands. The blood vessels narrowing causes ulcers that can lead to serious implications such as bone infection and even loss of digits.

At the beginning of the COVID-19 pandemic I was furloughed and decided to use my extra free time to raise awareness of the condition so I started a fundraising campaign, for Scleroderma and Raynaud’s UK (SRUK) the only charity in the UK dedicated to helping people with this condition.  In May I completed a 40km walk – which was a painful challenge due to my scleroderma. Despite that, every Saturday throughout May I walked a 10km perimeter around my house and my friends and family joined in virtually.  I was also joined by other people living with scleroderma that I knew via support groups in USA, Canada, Netherlands and London.

I felt passionate about the fact that, Ireland did not have a support group for scleroderma and I wanted to change that. I am pleased to say, that with the support of SRUK we have set up the first Northern Ireland SRUK support group and so far, we have had over 40 people join us, virtually of course!

I feel this is a real accomplishment. This disease can make you feel isolated, because it’s rare people don’t understand how our illness affects us and treat us like exaggerating hypochondriacs.  I’ve also had to be my own advocate searching for treatments and looking after my ulcers because, apart from the specialists, health professionals don’t know enough about it.  Due to the low numbers it feels like there’s not much investment in clinical trials and that’s what is most frustrating.

But now I’ve found both newly diagnosed and those who have had the condition a while are loving our support group. We share our experiences and advise of the treatments we are on which may help people who are struggling with their meds to ask their doctor about different meds. It gives us somewhere to go where like-minded people who are facing something in common can feel in a way ‘normal’; we also love each others’ company and have a chat and a laugh!

I’ve been back at work since August with a fabulous company who are very caring and considerate when it comes to this condition and one thing that the pandemic has changed for the better is not having to take time off work for appointments; I email my doctor with photos and descriptions of my pain symptoms and they kindly reply with text and advising of any medications that may be needed.

I consider myself to be very resilient; I’ve had many events in my life where I’ve had to deal with things and move on. In March 2020 I was very scared of the unknown but now everything we did as a family paid off and my husband, children and I thankfully didn’t catch it. I’ve received first of my vaccines today and am due to receive the second in May. I look forward to a positive outcome to all of this very soon.

Scleroderma is incurable at present but with timely and proper support, life quality can be enhanced and life expectancy significantly extended. So, I will keep on advocating for support and equality of healthcare for all of us.