Una's story

I'm Una and I was diagnosed with diffuse scleroderma in 2015.

At the beginning of the COVID-19 pandemic in 2020, I was furloughed from work and decided to use my extra free time to raise awareness of this condition. So, I started a fundraising campaign for SRUK. In the May, I completed a 40km walk – which was a painful challenge due to my scleroderma. Despite this, every Saturday throughout May I walked a 10km perimeter around my house, and my friends and family also joined in virtually. I was also joined by other people living with scleroderma that I already knew via support groups in The USA, Canada, The Netherlands, and London.

I felt passionate about the fact that Ireland did not have a support group for people affected by 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. Today we have an amazing group, with over 100 people from across Ireland, mostly women and a handful of men. Each one of these people has their own struggles with different types of the condition.

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

But now, I’ve found both the 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 medications to ask their doctor about what’s available. 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 other’s company and have a chat and a laugh!

I’m now back at work with a fabulous company who are very caring and considerate when it comes to this condition. Since the pandemic I can also now email my doctor with photos and descriptions of my pain and symptoms, and they kindly reply with a text, and advise of any medications that may be needed. 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.

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 everything we did as a family paid off and we thankfully didn't catch the virus.

I attribute my ability to live a relatively normal life to an amazing support network, from my family to the consultants at Ulster Hospital scleroderma clinic, and the staff at Dungannon South Tyrone Hospital who provide me with the highest standard of care (shared care due to close proximity of my home address), and to the company I work for who have allowed me to carry on with my career as 'normal'. I really appreciate the support.

That said, I must stress that we need more awareness and research into this condition to help with better treatments, especially for the patients here in Ireland (both North and South). Ulster Hospital has set up a fortnightly scleroderma clinic and we urgently need all consultants to refer their patients to be treated at this clinic. Currently, people are being treated by individual rheumatologists across a number of hospitals in the north of Ireland, and this is having a negative effect on knowledge of the condition, so it makes sense to bring the care 'under one roof’. This will significantly increase the knowledge that consultants require, as seeing patients is more effective than reading medical notes.

Last updated: June 2024