Milltown Brothers musician urges people to recognise rare disease during awareness campaign organised by Scleroderma and Raynaud's UK (SRUK)
A former Colne musician is helping to raise awareness of a rare autoimmune disease after revealing the years-long journey that led to his diagnosis.
Simon Nelson, originally from Colne and now living in Elton, near Peterborough, is sharing his story as part of Scleroderma Awareness Month, organised by Scleroderma and Raynaud's UK (SRUK).
The charity is calling on both the public and healthcare professionals to “hear the unheard” by recognising the symptoms of scleroderma earlier and reducing delays in diagnosis.
Simon (63) first noticed stiffness in his hands and forearms, along with ongoing digestive problems including acid reflux. After several GP appointments and blood tests at Peterborough Hospital, he was diagnosed with diffuse systemic sclerosis in July 2021.
Despite the diagnosis, Simon has continued to pursue his career as a market research consultant while also performing with indie band the Milltown Brothers, who enjoyed chart success in the UK and the United States during the early 1990s.
As a guitarist, the condition has had a significant impact on his playing.
“The physical changes have emerged slowly for me, and one adapts quite well to the issues over time; they become the new normal," he said.
“However, coming to terms with the diagnosis and understanding its consequences have been more challenging from a mental and psychological perspective. It is like a constant faint shadow creating a sense of uncertainty.
“You must guard against too much introspection because it can affect your mood and those closest to you.”
Simon said he has had to adapt the way he plays guitar as stiffness and reduced dexterity have affected his hands and fingers. However, he credits music with helping him cope with the emotional challenges of living with the condition.
The Milltown Brothers released their sixth studio album in 2025, with the record reaching number 37 in the UK Vinyl Album Chart and number nine in the Scottish Album Chart.
Looking back, Simon believes he may have experienced symptoms much earlier than his diagnosis.
“I think the disease came on for me in my thirties and the symptoms first appeared in my gut,” he said.
“Had I been diagnosed back then, it could have mitigated or delayed some of the wider effects, including skin hardening, Raynaud's and reflux.”
Scleroderma is a rare autoimmune disease that causes the immune system to attack healthy tissue, leading to hardening of the skin and, in some cases, damage to internal organs.
New research commissioned by SRUK suggests that many patients continue to face lengthy waits before receiving a diagnosis.
The charity surveyed 250 patient-facing primary healthcare professionals and found that although most had heard of scleroderma, only 30 per cent said they would immediately refer a suspected case to a specialist. Even when a patient specifically raised concerns about scleroderma or secondary Raynaud's, only 40 per cent said they would make an immediate referral.
Previous research also found that people with systemic sclerosis wait an average of 30 months from first experiencing symptoms to receiving a diagnosis, while some wait more than five years.
Sue Farrington, Chief Executive of SRUK, said: “This Scleroderma Awareness Month, we are urgently calling on healthcare professionals and the public to hear the unheard, recognise the signs of systemic sclerosis and other rare autoimmune rheumatic diseases and act sooner.”