Woman diagnosed with ‘one of the worst diseases you can get’ after feeling like she was being ‘burnt alive’

A woman who had the ‘first year of her son’s life taken away from her’ due to a rare skin condition causing sufferers to feel like they are being ‘burnt alive’ has been campaigning for funds to fly across Europe for further treatment.

Rachel Bradford, who lives in Torbay, Devon, noticed an ‘extraordinarily itchy’ rash developing on her skin while carrying her second child, Michael.

Initially fearing for her health, Rachel, who was 24 weeks pregnant at the time, sought advice from doctors.

The 30-year-old was initially told that her ‘blistering’ rash she’d developed and the overwhelming feeling of being ‘burnt alive’ were nothing more than intense pregnancy-related symptoms.

However, two weeks later, Rachel’s pain worsened, prompting her to head to the Royal Devon and Exeter Hospital to get checked out again.

Rachel Bradford first developed symptoms in her 24th week of her second pregnancy (GoFundMe)

Again, Rachel and her husband Jack, 31, claimed they were ‘sent away’ by medical experts who said her condition was ‘nothing to worry about’.

The pair were also allegedly dismissed by staff members in the institution’s A&E ward.

“We were still being told it could go after pregnancy, it was just sort of brushed off,” Jack explained.

Rachel has emergency C-section as she ‘couldn’t open legs’

At this point, the rash had reportedly spread from the heavily-pregnant woman’s arms and legs to her head, face, hands, neck, back, shoulders and ears.

Rachel was also ‘sporadically’ wheelchair bound, grappling with pain, suffering from uncontrollable spasms and loss of feeling in her swollen limbs.

The woman, who said she had ‘suicidal’ thoughts in the lead up to her son’s birth, was forced to undergo an emergency C-section at Torbay Hospital because she ‘couldn’t have a natural birth’.

“I couldn’t open my legs,” the former support worker confessed.

“They were so swollen from the condition and my mobility was almost nothing at that point.

“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.”

Rachel and her partner submitted a complaint to Torbay Hospital.

It’s understood that the hospital admitted the woman’s ‘experience of care was not a positive one’.

Despite doctors telling her that the rash symptoms would subside, Rachel claimed she felt as if she was ‘constantly on fire’ after giving birth in May 2024.

Still to this day, she suffers from the spasms, as well as joint pain and brain fog.

Rachel was eventually diagnosed with a rare condition known as erythromelalgia after weeks of uncertainty.

Erythromelalgia causes and symptoms

She was diagnosed with a rare disorder known as erythromelalgia (PA Real Life)

The NHS says that erythromelalgia - which is described as 'one of the worst diseases you can get' - is a rare neurovascular condition causing burning pain, redness, hot skin, and swelling, typically in the feet.

Some professionals believe the disorder is caused by another illness or even a faulty gene inherited from one of your parents.

A symptom flare-up can be caused by exercising, drinking alcohol, dehydration and stress.

Speaking about his wife’s ongoing struggles, Jack said: “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.”

Rachel has had to give up her job due to the pain EM has caused her, and she reportedly struggles both mentally and physically.

Jack claimed that if their one-year-old son Michael sits on his spouse’s lap 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, it’s absolutely horrendous,” he added.

Parents ‘frustrated’ with erythromelalgia care

Rachel's husband said the lack of care she has received has been 'frustrating' (PA Real Life)

Both parents have been visiting Royal Devon and Exeter Hospital for Rachel’s care and pain management.

However, the couple alleged that doctors told her to just ‘put some socks on’ and that they couldn’t ‘do anything else’ to help her manage her symptoms.

“We’ve found it all so frustrating, it’s been endless amounts of disappointment and it’s not given us any hope,” Jack said.

A spokesperson for the Royal Devon has responded to Rachel and Jack’s claims, saying: “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.”

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.”

GoFundMe to help fund erythromelalgia recovery

The mum, who has had to give up her job, is now seeking funds for further treatment in Europe (PA Real Life)

Rachel, who has ‘PTSD, severe depression, suicidal thoughts, depression and anxiety’, is now trying different medications in the hopes of banishing her pain and relieving her erythromelalgia symptoms.

"It feels like I’m burning alive, like my body is constantly on fire,” 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.”

The couple have also launched a GoFundMe page, with hopes of getting to Italy to try out a non-invasive chronic pain treatment.

“Now that the Drs are ignoring our calls, emails etc burying their heads in the sand as they have ‘never seen a case so severe in the UK’ (their words) we are looking to get help ourselves, we can’t do this alone, any help is really appreciated,” they alleged.

At the time of writing, the page has raised £2,478 of its £2,800 target with 152 separate donations.

You can donate to Rachel and Jack Bradford’s GoFundMe page here.

If you’ve been affected by any of these issues and want to speak to someone in confidence, please don’t suffer alone. Call Samaritans for free on their anonymous 24-hour phone line on 116 123.