In early 2016, Fred Whitby was diagnosed with a rare autoimmune disease causing skin thickening, joint pain, finger ulcers, stiffness and difficulty swallowing.
He has a rare disease called diffuse cutaneous systemic sclerosis. With no cure available and symptoms getting progressively worse, Fred decided to take up an opportunity offered by staff at the Royal Free Hospital.
Fred, from Feltham, has become the first person in the UK to participate in a global research trial, supported by the North Thames Clinical Research Network, testing the effectiveness of a new drug. He says taking part in this research has given him new hope of finding a cure. This is Fred’s story.
“I remember being diagnosed. I began experiencing sensitivity in my fingers in early 2016 and my fingertips became discoloured. I visited my GP who initially suspected Raynaud’s, a condition that affects blood supply to parts of the body. I was referred to a specialist at the Royal Free and it was later confirmed I had scleroderma (or diffuse cutaneous systemic sclerosis).”
Since receiving his diagnosis Fred has had to make significant adaptations in his life to manage the disease and has now swapped a career in the motor trade for a less manual job. Fred has been prescribed medications to help manage his condition but is acutely aware there is no existing cure.
It was at the Royal Free Hospital in Hampstead, London that Fred was offered the opportunity to take part in the clinical trial testing the effectiveness of the new drug. The drug is designed to disrupt signalling pathways of the immune system that lead to the development of the disease. If found to be effective, this drug could offer a treatment for this rare but life altering disease.
Fred, 57 years old, explained: “When the team at the Royal Free offered me the opportunity to take part in a new clinical trial that aims to find a cure it took me a while to decide if I should participate. The trial requires quite a big time commitment and of course there are no guarantees that the drug will work. I thought for six months but eventually, supported by my wife and family, decided to sign up.
“As part of the trial I’m given an injection every week by a nurse, either at the hospital or in my home. The treatment lasts for six months. Although it is a big time commitment, I know that without research a cure will never be found. Even if participating in this trial doesn’t benefit me in the short term, my hope is that it will benefit me and others with my condition in the future.”
Summing up his experience so far Fred said: “The team at the hospital have been amazing and I’ve been treated so well. Although I know the nature of my condition means my symptoms may get progressively worse, participating in this clinical trial has given me hope and I’d definitely recommend others take up the opportunity to take part in this life changing work.”