Callum Hobson hopes other people will be able to avoid debilitating skin condition
An east Hull dad left unable to cuddle his new-born baby daughter because of a severe skin condition is hoping to raise awareness by sharing his story. Callum Hobson, 25, says he has “more or less lost” the past two years of his young life because of the effects of TSW, or Topical Steroid Withdrawal.
The poorly recognised condition can occur after the long-term or frequent use of prescribed steroid creams, or topical corticosteroids, is ended. It can cause severe skin symptoms like burning, redness, intense itching and oozing after the medication is stopped.
Flaking skin and open sores can develop, even away from the site that was originally being treated, and can last for months or years. Callum, partner to Liv Tweddell and father to their seven-month-old, Maddison, says at the height of the onset of TSW, he could be “screaming in agony”.
“I looked like I had been dipped in a vat of acid,” he said. “If my partner so much as moved the duvet or opened a door that meant I felt a draught of air on my skin, I was screaming in agony.
“It was absolutely appalling. There is this burning sensation; you feel like your whole body has been nettled.”
Callum said scratching brought a “tiny bit of relief” but his skin had broken down to such an extent that his clothes and his bed would be covered in blood. “I’ve lost count of the number of T-shirts, joggers and sets of bedding I’ve been through.”
Callum was working as an electrician when his job found him coming into contact with “a lot” of fibreglass insulation. “I started getting all these blemishes in the creases of my arms.
“When they got quite sore I went to the doctors and they gave me some steroid cream. I never thought anything about it; I’d put the cream on and they would go.
“I was using the cream, and using the cream, and if I ran out I was prescribed some more. I didn’t realise I wasn’t supposed to exceed using it beyond five days; I was using this steroid cream for about a year and when I eventually came off it, my body went into TSW.”
Callum ended up in hospital at one point, on a drip and “all sorts of medication”, after he and Liv believed he might have contracted sepsis. “My legs, arms and everything went this weird purple colour.”
Given antibiotics for the open sores that would form, Callum was “back and forth” with treatments and missed being able to start an offshore job he had trained for. Last November, he had to give up his job as an electrician at an oil refinery completely, saying: “I couldn’t even walk.”
When Maddison was born, Callum missed the birth and could not hold her for months. “Liv would spend days in tears looking at me and saying ‘I can’t do anything for you’.”
He said his partner and daughter had been what kept him going – and he has begun a treatment called CAP (cold atmospheric plasma) therapy that works by reducing inflammation, killing bacteria and improving the skin barrier. “It’s very expensive – it’s £500 a time – but it’s the only thing that seems to work,” said Callum, who has found his symptoms lessening but not gone.
He has set up an Instagram page to post about TSW and raise awareness. “I’m not embarrassed or anything, but it is me putting my life out there.
“I’ve had people reaching out to me in the last six months – one lad was in his eighth year of steroid withdrawal. This is bigger than myself.
“If people know to avoid long-term use of steroid creams, then I am pleased to have been able to raise that awareness.” Callum is close friends with Tommy Coyle – cousin of the former professional boxer from Hull of the same name – who he said had been of amazing support to him.
Tommy, also a boxer, held a charity boxing event recently to help Callum and is planning another, as well as other events to raise funds for and awareness of TSW. Callum said: “He played rugby with me when we were lads and we went to school together.
“For anyone who knows him or spends time with him, their life is better for it. He does things behind the scenes – he has offered to do the shopping for us or anything else we need.
“After school, you go your separate ways, don’t you, and maybe see one another at Christmas or around town sometimes. As much as this [suffering with TSW] has been quite detrimental, it’s brought a few good mates back together again.”
Tommy said: “Sadly, there’s no NHS support or funding and many people with TSW are left to manage the condition alone. I’ve done a few events up to now to try to help Callum – we had a little darts tournament and a charity boxing fight and I’m doing another a week on Friday [November 21] – and a lot of us are going to do a bike ride as well.
“We’re holding a tombola raffle to raise funds to help with his ongoing care and to spread awareness of this misunderstood illness.” Any businesses that can help Tommy with prize donations “big or small”, possibly vouchers, products, or experiences, can email Tommy at tommycoyle21@hotmail.com
“Anything you could contribute would mean so much and would help make a real difference,” Tommy said.