Magherafelt woman gives a glimpse into what life is like living with rare autoimmune condition

A County Derry woman has appeared in a charity video to highlight a rare autoimmune condition that affects the skin and/or internal organs.

Dawn Neill from Magherafelt is featured in the #SayScleroderma film produced by the charity, Scleroderma & Raynaud's UK (SRUK).

The mother-of-two has a unique form of systemic sclerosis, called scleroderma. This condition can cause symptoms such as Raynaud’s phenomenon. This involves the swelling and stiffness in the joints, thickening and hardening of the skin, difficulty swallowing and other symptoms. 

The film which has been shared on social media by the charity features seven people from across the UK whose daily lives are impacted by the condition.

The video is a way of highlighting a need for greater awareness around ‘scleroderma’, a word that not many people have heard of unless they themselves are affected. June is Scleroderma Awareness Month, SRUK is urging the public to share its #SayScleroderma film and help raise vital funds into research of the rare, autoimmune disease.

WATCH ABOVE: Dawn can be seen in video raising awareness on scleroderma

Dawn said getting involved in the film made her feel less alone. 

“It was amazing to see others who know what I am dealing with. I don’t have to explain why I seem well but I’m ill. I had attended a few Zoom meetings with the charity and it was lovely when they reached out and asked me to be a part of the film. It is great to be able to help raise awareness of Scleroderma. If this is something I can do to help someone else then I will do it. I think the stigma of diseases comes with a lack of knowledge so speaking out about my health to raise awareness is a good thing,” she said.

The 43 year-old says she now hopes to raise awareness about scleroderma and its symptoms.

The journey began for Dawn when she was diagnosed with Epilepsy in her early 20s. 

Shortly after she started to notice red blotches ‘almost like bust blood vessels’ over her skin including the palms of her hands and inside her mouth. 

Dawn recalls how she spoke to her neurologist who thought it could’ve been a severe reaction to medication she had been on. However this was later ruled out. 

Next came a referral to dermatology where it took two years for doctors to discover what Dawn was suffering from was called Scleroderma. 

Dawn said: “In the beginning all it was to me was the little blood spots that I could see on my skin. Another symptom I have is my nail beds being quite tight, dry and often break. That made me feel self-conscious about my appearance.” 

It wasn’t until the pandemic in 2020 that Dawn rally began to struggle with the condition. 

She continued: “It was during lockdown it really started to activate. I had heard from other people that the condition lies dormant until it’s not and that’s how it was for me. I had been trying to keep fit and I had noticed over time that I couldn’t flatten my hands or make a fist. I was enjoying keeping healthy but that had to stop due to this. The doctors do regular tests on me every year to monitor my heart and lungs. Thankfully mine are stable but at some point there will be difficulties. I have a small amount of fluid on my heart which at the moment is asymptomatic thankfully. I have good doctors who keep a watchful eye on me. From day to day I feel pain in my hands, wrists and joints. You use your hands for absolutely everything and you don’t realise how much you do until you don’t have full use of them.”

The condition affects almost every aspect of Dawn’s life, including work. 

Currently working in a school office, Dawn said she recently applied for another role and didn’t measure up but on reflection she believes she wouldn’t have been able to sustain it full time due to her condition. 

“At work I would have different adaptations. I have a grip that I can flip over a pen and I don’t go anywhere without a set of splints and pain relief.” 

Dawn admits that she uses humor a lot as a way of dealing with her illness.

“I say to a lot of people that autoimmune diseases are like Pokemon. They don’t come on their own, when you get one you have got to get them all.” 

To add to this Dawn discovered just two years ago that she has rheumatoid arthritis as well. 

“I find that arthritis affects the feet the most. Running or a lengthy walk can be a bit much for me. Like anyone with chronic pain I have days where I think today is a great day so I will get loads done. It’s the next day that I will suffer for having a good day.”

Dawn credits her loving husband, two young children and parents as her ‘lifeline’ in times of need, along with supportive healthcare professionals and life adaptations. 

“My family can see before I do what I need. I have two boys who are nine and 10. They are great. I still love cooking and have adaptations around the house to make that possible. When it comes to dressing I have a long handled shoe horn to help me with my slip on shoes and most of my clothes don’t have buttons. I can have a bad day even if I put on the wrong item of clothing. If I have to wear something with a zip then I have a gadget I can use. When it comes to showering I have a chair in case my epilepsy triggers and I feel dizzy. Even something as simple as getting washed and putting makeup on is a struggle when I can’t flatten out my hands.

“It was hard to get a diagnosis to begin with. Not many people know much about autoimmune diseases but they are more common than most think. When I looked into my family history my aunt had lupus and there is a history of rheumatoid arthritis in my family. Since getting a diagnosis, the care I have received has been exemplary. I have been seen by the regional expert in the Ulster Hospital and continue to receive my care there. My rheumatologist is a gentleman. If I need anything it’s ask and you shall receive. I have been very lucky with the care I receive. My care is an example of everything that the NHS should be. I wish that to be true for everyone.” 

Treatment for Dawn incorporates several forms of medication. There are pills that work to minimise the inflammation in the body, stomach tablets to help ease oesophagus symptoms, meditation to help keep the epilepsy at bay and anti depressants. 

Throughout all this struggle Dawn has remained a fighter with a positive attitude. 

“What I have learnt throughout this journey is acceptance. I have had to stop fighting the norm, this is the new norm for me. This is a disease with no cure for. The charity is hoping to bring about this change with their campaign. It is about keeping the quality you have for as long as you can. That’s not to say it doesn’t take its toll mentally. I have struggled with depression among all this. My mindset every day is that if I am fit to get up you get up and keep going. I tell myself that if I decide to lie down and let this all take hold that's it for me. My best friend always likes to remind me that I have the disease but it does not have to have me. I have this of course but it doesn’t have to define me. There are times I do have to let it win and realise this is where I am. Some days that is easier said than done.”

Dawn admitted it is hard to start the conversation about chronic illness.

 “Most people with chronic illness can look well, it is a hidden disability. There might be more going on inside some people. People can be fighting a battle that you just don’t know about. The majority of our organs are internal so nobody knows what is going on inside anyone else.”

A person who is living with scleroderma will have an overactive immune system, meaning that the body attacks its own healthy tissues, causing hardening and scarring.

Scleroderma can be difficult to diagnose because it can affect different parts of the body and take many forms. It affects an estimated 19,000 people in the UK and can be life-threatening. All forms of the condition will impact a person's quality of life.

Early diagnosis is vital to manage symptoms effectively, minimise development of new symptoms and diagnose any underlying illnesses.

People who receive an early diagnosis can make informed choices about their treatment options, lifestyle adjustments and take part in clinical trials; empowering them to take charge of their health.

Earlier detection and intervention may also delay the onset of serious complications, such as pulmonary fibrosis.