Woman, 30, left in agony after developing rare condition which makes her feel like she's been set on fire
When Rachel Bradford first noticed a blotchy rash breaking out over her skin, she put it down to pregnancy.
But within weeks the expectant mother was in excruciating pain leaving her with the complexion of 'a dead person' and practically immobile.
As her due date loomed closer, Ms Bradford, 30, and her husband Jack, from Devon, pushed for answers after she suffered uncontrollable spasms and her skin began to blister, forcing her to step back from work.
'It feels like I'm burning alive, like my body is constantly on fire,' the support worker said.
'I was praying the pain would stop—I couldn't take it anymore and I felt no one was listening to me, no one was taking me seriously.'
After calling NHS 111, the couple were advised to seek help at Royal Devon and Exeter Hospital, where they were told her condition was not a cause for concern.
'We were still being told it could go away after pregnancy, it was just sort of brushed off,' her husband added.
Then, unable to give birth naturally due to her swollen limbs that saw her wheelchair bound, Ms Bradford was forced to give birth to her son, Michael, via emergency C-section on May 31 2024.
Rachel was previously fit and healthy and expecting her first son with husband Jack when the 'extraordinarily itchy' rash suddenly appeared all over her body in March 2024
The rash started on Rachel's arms and legs before it spread to her head, face, hands, neck, back shoulders and ears
'I couldn't have a natural birth anyway because I couldn't open my legs', she explained.
'They were so swollen from the condition and my mobility was almost nothing at that point.'
But the burning sensation did not subside after she gave birth, leaving her contemplating taking her own life just months after her son was born.
It was until almost a year later, however, that the true cause of her burning symptoms came to light.
In February this year, the young mother was diagnosed with erythromelalgia—a rare condition that causes burning pain, redness and hot skin, along with chronic regional pain syndrome (CRPS).
'It's thought the condition is related to her blood vessels,' Mr Bradford explained.
'So they will either completely constrict and she will look like a dead person, or it will go the other way to the point her skin will blister.'
Along with the classic symptoms of the condition, which include burning pain that often starts as itching, redness and swelling the mother-of-one also suffers from spasms, brain fog, joint pain and loss of feeling in her extremities.
Rachel's symptoms were initially brushed-off by doctors as pregnancy related and the couple were sent away
Rachel give birth to Michael, now one, on 31 May 2024 via emergency C-Section as she could not give birth naturally as a result of the swelling in her limbs
Rachel's condition has affected every aspect of her life, so that she can no longer play with her son because of the pain
She said: 'The condition has taken everything from me. Pregnancy, motherhood, my job my mobility, my independence—I can't even play with my son.'
'She can't escape it. From the moment she opens her eyes, it's the first thing she feels,' her husband added.
'If Michael, now one, sits on Rachel's lap for even for even just five minutes it causes her thighs to flare up.
'Rachel is an amazing mum and to see her completely limited by something outside of her control is absolutely horrendous.'
A flare-up can come last anywhere from a few minutes to a few days, leaving Ms Bradford's skin looking blue.
Ms Bradford is now trying new medications to help manage symptoms, but the couple say they are 'disappointed' with the standard of care offered by the hospital.
Mr Bradford said when they visited Royal Devon and Exeter Hospital for his wife's pain, staff told her to 'put some socks on' and sent her away, insisting there was nothing they could do to help her.
'We've found it all so frustrating,' he said. 'It's been endless amounts of disappointment and it's not given us any hope.'
The rash soon worsened turning bright red and blistering in some places
Jack says Rachel's skin sometimes resembles that of a dead person, The couple are now fundraising to raise funds for a non-invasive therapy that they hope will relieve Rachel's symptoms
The couple have now launched a GoFundMe page, which has raised over £2,000 so far, to help them fund scrambler therapy in Italy—a non-invasive treatment helping patients in chronic pain.
'If we have the money for another option, another treatment…I don’t want Rachel to be hitting a point where she says we have nothing more to try,' Mr Bradford said.
The hospital has since issued an apology and have encouraged Mrs Bradford to raise her concerns with their complaints team for further investigation.
A spokesperson for the hospital 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.'
Torbay and South Devon NHS Foundation Trust added in a statement: 'Last year we received correspondence on behalf of Rachel Bradford via our Patient Advice and Liaison Service.
'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.'
According to the NHS, it is not clear what causes erythromelalgia.
Sometimes the condition can be triggered by a faulty gene or brought on by another condition.
Whilst treatment can vary depending on the cause, most treatments aim to prevent flare-ups which are usually triggered by an increase in body temperature.
Treatments options include medicines, creams, gels, sprays, tablets and medicines injected directly into the bloodstream. Rarely, sufferers will need surgery.
