Teenager dies suddenly of rare disease she thought was an allergy

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Jess Johnson, 18, had systemic capillary leak syndrome (SCLS), which causes blood and other fluids to leak into bodily tissue. She had suffered symptoms for three years before her diagnosis in February 2020, but had put these down to an allergic reaction at one stage, reports Yorkshire Live.

Jess’ battle with the condition ended on March 7. She had been dating her childhood sweetheart Chris Abbott for four years after first meeting at primary school.

Paying tribute to Jess, Chris said: “I’m going to remember her as a cheeky, mischievous young woman.

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.

“March 22 was our four-year anniversary so I’m still celebrating everything for her and, like I said to my mother-in-law, I don’t class it like I’ve lost a relationship because I still class myself as in a relationship with her.”

Jess’ condition, sometimes also referred to as Clarkson’s disease, is so rare it has affected less than 500 people worldwide since its discovery in the 1960s.

Chris, 18, said Jess was on tablets to try to manage what she thought was an allergic reaction when she first had Clarkson’s symptoms, as one of the main physical symptoms of the disease is a swollen face.

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

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

“She was fighting a battle for three years because she had started suffering minor health problems and it eventually got worse and that’s when we discovered it was Clarkson’s disease.

“The way it started off, it looked like she had an allergic reaction to something and when they diagnosed her in February last year she was on all sorts of tablets to try and manage it.”

Jess, who lived with Chris in Wath Upon Dearne, South Yorkshire, 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.”

Systemic capillary leak syndrome (SCLS) does not have a cure.

Chris continued: “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.

“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.”

Chris has set up a GoFundMe to help Jess’ family afford her funeral costs. You can donate here.

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