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Power of a Woman: Kelle Bryan on Living with Lupus

Kelle Bryan and Lupus

Kelle Bryan is a founding member of legendary U.K. girl group Eternal. Since leaving the band, she has been fighting lupus and working as an advocate for other people living with the disease.

As a member of Eternal, one of the most successful girl groups in British music history, Kelle Bryan is no stranger to the spotlight. In the band, she achieved 12 U.K. top 10 singles and four multiplatinum albums. Twenty years from her pop music heyday, Kelle is making headlines for different reasons now: as an advocate and spokeswoman for people with lupus everywhere.

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Kelle is diagnosed with systemic lupus erythematosus, the most common form of lupus. She first became aware of her symptoms after her final performance with Eternal at Party in the Park 1998, which was in front of tens of thousands, including Prince Charles.

In the months that followed, Kelle received a fax informing her that she was no longer a member of the group, and began to take her first steps toward launching a solo career. It was during this stressful period that she woke up with the first of what would prove to be a series of debilitating symptoms.

“I couldn’t bend my right index finger. I woke up one morning and it was just sort of stuck in a claw shape,” she recalls. At first, Kelle assumed she had simply slept on her arm funny. But as the paralysis spread through her whole hand, she paid a visit to her doctor, who told her she had a post-viral infection and prescribed her an anti-inflammatory medication.

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It’s quite unnerving that, even now, doctors are still reading books and phoning my specialist: ‘What do we do with her?’
Kelle Bryan, living with lupus

But four weeks later, Kelle had started to develop ulcers on her legs, arms, face, and ultimately her mouth. “The ulcers were everywhere and they were just sort of constantly weeping and not peeling,” she says. Her “claw,” meanwhile, had spread across the whole right side of her body. “I wasn't able to move anything down the right-hand side. And so I was able to sing less and less, and the symptoms were spiraling.”

‘You’re not going home’

Because of the ulcers in her mouth, Kelle paid a visit to her dentist to see if the symptoms might be related to gingivitis. It didn’t take him long to say: “You’ve got lupus.”

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“Fortunately, my dentist had some experience with the symptoms before, and he'd [been my] dentist since I was really young,” says Kelle. He recommended her to a specialist at the London Independent Hospital, Professor David D’Cruz, who admitted Kelle to the hospital on the spot.

“On the appointment he said, ‘You're not going home,’” Kelle recalls, “And then I was admitted to the hospital there and then.”

With her condition uncontrolled for so long, Kelle by now had extensive motor (neuromuscular), liver, and kidney damage. For 10 days, she stayed at the hospital so that doctors could confirm the diagnosis and develop a course of treatment: “I had infusions, and steroids, and all sorts of medications to get the disease under control.”

“I don't remember a lot of the time in hospital,” says Kelle. “I just remember going through really horrific tests, like nerve tests, which is like shock treatment they give you to see what part of your nerves are affected. And brain scans, and MRI scans, and lots and lots of different tests.”

“They couldn't seem to tell me what was wrong because there still isn't one definitive test for lupus, so I had to just go through lots and lots of different tests.”

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‘What do we do with her?’

While almost 20 years have passed since then, Kelle says not much has changed in terms of what the medical community knows about lupus.

In the summer of 2016, Kelle contracted a viral infection from her daughter, who had picked it up at school: “My little girl, Kayori, came home from nursery with [a meningococcal infection], gave me a big kiss — mwaa! — and then within 48 hours I was in intensive care, and I had pneumonia.”

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At the hospital, the reaction of the doctors was not reassuring. Rather than treating her right away, she looked up to see her doctors … reading books.

Kelle Bryan quote

Their dilemma? Lupus causes your immune system to attack and damage your healthy tissue and organs, leaving you more susceptible to new viral and bacterial infections. In a situation like Kelle’s, it can be difficult to fight the viral infection without overstimulating the immune system.

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“It’s like a lose-lose for a lupus patient,” she says. “So what happens then? You've got a disease that's being suppressed, so do you fight the lupus or do you fight the pneumonia? How do we get this person to live?”

“I was lying in intensive care and I'm watching these doctors pace up and down. They're like ‘House,’ reading books. And I'm getting totally alarmed,” recalls Kelle. "It’s quite unnerving that, even now, doctors are still reading books and phoning my specialist: ‘What do we do with her?’”

‘Lupus doesn’t discriminate’

Lupus facts
  • Lupus affects over 5 million people globally, including 1.5 million in the U.S.
  • 63 percent of those with lupus say they were initially misdiagnosed.

Lupus affects over 5 million people across the globe, and is most common in women between 15 and 44 years of age. Unfortunately, awareness of the disease is still woefully low. Over 60 percent of people in the United States have never even heard of lupus.

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Kelle argues that’s partly because the effects of lupus were initially played down.

“I think, sadly, in the beginning, there was very much a lack of awareness or understanding of the disease,” she says. “And people just thought of it as a bit of a skin rash, because that's all that really was publicized.”

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There was also the issue of who it was affecting. “In the early days, research showed that it just affected ethnic minorities. Not true, right? But that’s what they thought in the early days,” says Kelle. “And so, again, with a disease that only affects a minority of people … even if that was the case, really? It’s people.”

“Lupus doesn't discriminate,” says Kelle. “You could be black, white, young, old, female, male, gay, straight … It really doesn't care. It's not fussed with what host it takes. It just will take whatever it wants and whenever it wants.”

‘It’s my life’

Kelle Bryan quote

Today, Kelle works with various organizations, including the St. Thomas’s Lupus Trust, to raise awareness about lupus and to tell the stories we don’t often hear about. In 2016, she gave a heartbreaking interview on “Loose Women,” the U.K.’s answer to “The View,” and her openness and honesty even caught the hosts off guard.

“It would be much easier if it wasn't me I was talking about, and I was just championing some cause that I thought was worthy of attention,” says Kelle. “It's not. It's my life.”

As a mother, lupus has impacted Kelle in a multitude of ways. Because she is so easily susceptible to infection, she has to stop at the door when dropping her children off at nursery. When they are sick, she has to wear gloves and a mask just to interact with them.

“And if they're poorly and I'm poorly, it's the worst combination,” she says. “I'll try really hard not to be around them. So I'll get someone else to take them away for the weekend, or go to my mum's, or just not be in my vicinity.”

‘It’s not me being rude. It’s me saving my life’

You’ve just got to be bold enough to explain [lupus] to people.
Kelle Bryan

“It's difficult being a parent. How do you explain that to your 5-year-old? To your 3-year-old? How do you explain that?” asks Kelle.

“And when they’re here and I’m poorly, all they want to do is go ‘Mummy! Mummy! I want to make you better! Are you OK?’ And I’m like, ‘No,’” she laughs. “I just tell them in a way that I hope that they understand and I just say that mummy's poorly, and this is what this is.”

Moving forward with lupus

For Kelle, it has paid to be open about her lupus with everyone involved in her life — from her children, to the staff at her children’s nursery, to complete strangers. On a recent train journey, while she was undergoing chemotherapy treatment, Kelle spotted a fellow passenger coughing and put on the surgical mask she carries with her. “I just said to her: ‘Look. I'm going to put my mask on, but I just need you to know it's not you. It's me, OK?’”

“I think you've just got to be bold enough to explain to people,” she says. “It's not me being rude. It's me saving my life. And then, when they look at it that way, it's not such a big deal.”

“So for me, it's just all about communicating and just being honest and real with people.”

When it comes to daily life, Kelle says that all she can do is be realistic of what she can do, and when she can do it.

“You just have to be flexible, and know that there’ll be days that you can and days that you can’t,” says Kelle, whose 2016 incident caused breathing, speaking, and motor difficulties, and the recovery was long. “You’ve just got to be prepared for the ups and downs.”

“I think you've kind of got to keep as normal as possible and do things that you can do, and don't worry about what you can't do,” she says.

“What I can't do, I can't do, right? But what I can do, I can do.”

Kelle briefly reunited with Eternal in 2014 and currently lives in London with her husband Jay and two children, Regan and Kayori Rose. As well as promoting lupus awareness, she runs a talent agency from her home. You can learn more about Kelle Bryan on her website, and follow her on Twitter to read about her efforts to promote awareness for lupus.

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