Teenager dies from rare disease after mistaking swelling for allergic reaction

A teenager has died of a rare condition that was initially mistaken for an allergic reaction as it caused her face to swell, as her childhood sweetheart shares his heartbreak.

Jess Johnson, 18, died on March 7 after being diagnosed with systemic capillary leak syndrome (SCLS), a condition so rare that only 500 people worldwide have had in the past 60 years.

She started having symptoms of SCLS – which causes blood and other fluids to leak into bodily tissue – three years earlier, with one of them being a swollen face.

That led to her family believing she suffered from an allergy, but little did they know she was actually affected by a condition that would cut her life short so suddenly.

Heartbroken boyfriend, Chris, 18, told the South Yorkshire Live that the two had met in primary school and had been together for four years after meeting again as teenagers.

He said despite her having passed more than a month ago, he still celebrated their four-year anniversary on March 22 as he still feels committed to Jess, who he described as “so selfless”.

Chris, who lived with Jess in Wath Upon Dearne, wants to raise awareness of the condition, which currently still has no cure.

“We don’t want anyone to go through what we’ve been through,” he said.

“Jess was in and out of hospital, in and out of appointments and when she died it was really sudden.”

Chris said that Jess was “always breathless” and had to take regular breaks even when she was only walking a short journey. She also suffered with fatigue and nausea, which are common symptoms of the condition.

“Even going upstairs was a struggle for her,” Chris said.

“I remember the day before she went into hospital, me and my nephew were sat in the bedroom playing video games and whenever she came upstairs to go to the toilet, she had to come into the bedroom and have a lie down before she could proceed with what she was doing, she was really struggling.”

He said: “Towards the end, she was on eight different types of tablet, it was no life for an 18-year-old.

“We still can’t believe it’s happened but she’s in a better place now, she’s not suffering with breathlessness anymore and can walk about freely.”

He explained how despite her death he still celebrated their four-year anniversary as “I don’t class it like I’ve lost a relationship because I still class myself as in a relationship with her”.

Chris said Jess always cared about other people first and herself second, even when she was in pain due to her condition.

“I’m going to remember her as a cheeky, mischievous young woman,” he said.

“She was always so happy and so upbeat and would always try her best to make everyone else happy – even when she was in pain with this disease, she was trying to keep me and her family happy.

“I’ll remember her because she was, well she is, the best thing that ever happened to me in my life.

“I told her I’d be there with her for the rest of her life and, sadly, I didn’t realise her life would be cut so short but, even that short period of four years with her, it’s been the best four years of my life.”