Mother’s rare condition was ‘brushed off’ by hospital as pregnancy symptom
A young mother says she feels like she is “burning alive” every day due to a rare condition that has robbed her of “everything”, including the ability to play with her one-year-old son, Michael.
The ordeal began in March 2024, when Rachel Bradford, then 24 weeks pregnant, noticed an “extraordinarily itchy” rash breaking out across her skin, covering her body in red blotches.
She visited doctors, but was told it was likely a pregnancy-related symptom, she said.
Just two weeks later, the 30-year-old, who lives in Torbay, Devon, with her husband Jack, 31, watched in horror as her skin worsened.
It turned “burning” red and “blistering” in some places, and black in others, resembling the complexion of “a dead person”.
Grappling with excruciating pain, uncontrollable spasms, and loss of feeling, the former support worker, who had to step back from her job due to her health, called NHS 111.
She was advised to seek help at Royal Devon and Exeter Hospital.
“They told us it was nothing to worry about and we were sent away,” Mr Bradford said.
“We were still being told it could go after pregnancy, it was just sort of brushed off.”
Ms Bradford said the pain was so bad that all she could do was pray it would stop.
“I felt no one was listening to me, no one was taking me seriously.”
Unable to open her legs due to lack of mobility and swollen limbs, Ms Bradford gave birth to her son via an emergency C-section at Torbay Hospital in May 2024.
But her symptoms persist, leaving her body “constantly on fire” – a torment that has left her feeling suicidal and without hope for the future.
Ms Bradford was finally diagnosed with erythromelalgia – a rare condition that causes burning pain, redness and hot skin – in February this year.
“It feels like I’m burning alive,” she said.
“This condition has taken everything away from me, pregnancy and motherhood, my job, my mobility, my independence – I can’t even play with my son.”
Her husband, an assistant store manager for an agricultural storage facility, added: “There’s always a part of Rachel’s body which is constantly on fire and it doesn’t go away.
“She can’t escape it, from the moment she opens her eyes, it’s the first thing she feels.”
The couple said they later submitted a complaint to the maternity ward in Torbay Hospital, and the hospital said it apologised that “Rachel’s experience of her care was not a positive one”.
It is often not clear what causes erythromelalgia, although it is sometimes caused by another condition or a faulty gene inherited from a parent, according to the NHS.
It can be difficult to treat, and those with the condition may need to try different treatment combinations to find ones that are successful.
Ms Bradford said she suffers with a multitude of symptoms alongside the condition, such as uncontrollable spasms, brain fog, joint pain and loss of feeling in her extremities.
The couple said they have visited Royal Devon and Exeter Hospital for her care and pain management.
There, they claim they were told by staff at the hospital to “put some socks on” and that they “can’t do anything else” to help Ms Bradford.
“We’ve found it all so frustrating, it’s been endless amounts of disappointment and it’s not given us any hope,” her husband said.
Ms Bradford said the condition has weighed greatly on her mental health, as she struggles with her mobility, her independence and motherhood.
“If Michael sits on Rachel’s lap for even just five minutes, it causes her thighs to flare up,” Mr Bradford said.
“Rachel is an amazing mum and to see her completely limited by something outside of her control, it’s absolutely horrendous.”
Ms Bradford is now trying new medications in the hopes it will relieve her symptoms.
The couple have also launched a GoFundMe page, raising over £2,000 so far, to help them access scrambler therapy in Italy – a non-invasive treatment helping patients with chronic pain.
A Royal Devon spokesperson said: “We are dedicated to providing safe, high-quality care to our patients with compassion and we’re very sorry to hear that Mrs Bradford’s experience of care did not meet these standards.
“We would encourage Mrs Bradford to raise her concerns through our complaints process so we can fully investigate and respond.”
In a statement, Torbay and South Devon NHS Foundation Trust said: “Last year we received correspondence on behalf of Rachel Bradford via our Patient Advice and Liaison Service in relation to the care she received from the Maternity Service at Torbay and South Devon NHS Foundation Trust.
“In our response we apologised that Rachel’s experience of her care was not a positive one; we are committed to learning from feedback and improving the experience of women and their families who attend our departments for their care.”
When life is difficult, Samaritans are here – day or night, 365 days a year. You can call them for free on 116 123, email them at jo@samaritans.org, or visit samaritans.org to find your nearest branch.
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