‘It’s like I’m burning alive’ – Mum says rare condition robbed her of ‘everything’ from motherhood to independence

A young mother who feels like she is “burning alive” every day says her rare condition has robbed her of “everything”, to the point she cannot even play with her own child.

Rachel Bradford, 30, who lives in Torbay, Devon, with her husband of two years, Jack, 31, and their one-year-old son, Michael, was 24 weeks pregnant in March 2024 when she noticed an “extraordinarily itchy” rash breaking out over her skin, covering her body in red blotches.

After visiting doctors but told it was likely a pregnancy-related symptom, Rachel watched in horror when just two weeks later the skin all over her body worsened, turning “burning” red and “blistering” in some places, and black in others, resembling the complexion of “a dead person”.

Grappling with her painful symptoms, which also include uncontrollable spasms and loss of feeling, the former support worker, who had to step back from her job due to her health, pushed for answers while in hospital – but she felt “no-one was listening” and she was “sent away” numerous times.

Unable to open her legs due to her lack of mobility and swollen limbs, Rachel gave birth to her son via an emergency C-section in May 2024 but her symptoms persisted, where her body is “constantly on fire” – leaving her feeling “suicidal” and without hope for the future as there is “no escape”.

Having been diagnosed with erythromelalgia in February this year, a rare condition that causes burning pain, redness and hot skin, the couple have launched a GoFundMe page to help them access further treatment options overseas with the aim of improving Rachel’s quality of life.

“It feels like I’m burning alive, like my body is constantly on fire,” Rachel told PA Real Life.

“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.”

Jack, 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.”

Rachel, who previously had no major health issues, noticed an “extraordinarily itchy” rash suddenly appear over her body when she was 24 weeks pregnant in March 2024.

“There was a point where Rachel would be sleeping with her nails in her shoulders, digging in so she didn’t scratch herself,” Jack said.

The couple visited their doctor, but Rachel said she was told it was likely a pregnancy-related symptom which would subside after she gave birth.

Two weeks later however, Rachel said her rash became “really bad”, prompting the couple to phone NHS 111 – and they were advised to seek help at Royal Devon and Exeter Hospital.

“They told us it was nothing to worry about and we were sent away,” Jack said.

The couple said Rachel’s rash then changed, turning red and “boiling hot”, where Jack recalled feeling the heat radiate from his wife’s skin.

“It’s thought it’s related to her blood vessels – 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,” Jack explained.

They said this started on Rachel’s arms and legs, before it spread to her head, face, hands, neck, back, shoulders and ears.

Jack and Rachel claim they visited the A&E department at Royal Devon and Exeter Hospital several times over the subsequent weeks, saying they were left waiting for hours, but were ultimately “sent away”.

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

At this stage, Rachel was heavily pregnant and the couple said she was wheelchair-bound as the condition left her with swollen limbs.

“Mentally, I was not right, I was suicidal,” Rachel 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.”

Rachel delivered her baby, Michael, via an emergency C-section at Torbay Hospital on May 31 2024.

“I couldn’t have a natural birth anyway because I couldn’t open my legs,” Rachel said.

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

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”.

Rachel’s symptoms did not subside after she gave birth – and she has since been diagnosed with erythromelalgia, a rare condition that causes burning pain, redness and hot skin, along with chronic regional pain syndrome (CRPS).

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.

Erythromelalgia can be difficult to treat, and those with the condition may need to try different treatment combinations to find ones that are successful.

Rachel 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 Rachel’s 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 Rachel.

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

Rachel 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,” Jack said.

“Rachel is an amazing mum and to see her completely limited by something outside of her control, it’s absolutely horrendous.”

Rachel 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.

“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,” Jack said.

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.”

To find out more, visit Jack and Rachel’s GoFundMe page here: gofundme.com/f/rachs-trial-by-fire

In the UK and Ireland, Samaritans can be contacted for free at 116 123, or via email at jo@samaritans.org or jo@samaritans.ie