As well as being an icon of nineties fashion, Dee Izmail is the founder and chair of Kawasaki Disease UK, a small UK charity set up to raise awareness of the classic symptoms of Kawasaki disease (KD). Dee’s passion outside fashion is raising awareness of Kawasaki disease so that children are diagnosed promptly

A late diagnosis with Kawasaki disease

A fashion icon of the 1990s, Dee Izmail has made bespoke pieces for celebrities such as Beyoncé, Cher, Shania Twain, Eddy Izzard and Isla Fisher. She made more than 80 pieces for the Spice Girls—think Mel B’s snow leopard-print catsuits, Geri’s red PVC all-in-one and Victoria’s chainmail bikini top and silver miniskirt from the Pepsi ad.

But in 1993, as the cameras flashed around her creations, Dee was facing a health crisis. Her second-born child, Nadia, who was seven months old, had been unwell for some time. Repeatedly misdiagnosed, her late diagnosis with KD only came thanks to the intervention of a nurse who happened to have seen the disease before while working in South Africa. Nadia was treated with an infusion of immunoglobin, but unfortunately she had already developed heart complications, as is the case for one in four untreated children.¹ “Nadia’s damage lasted five years and she was kept on high doses of aspirin for four years to keep her blood thin.”

Dee’s worry about her daughter during her illness was followed by further anxiety about the possible long-term consequences of the disease. Those concerns still weigh heavily on her mind today.

Empowering parents

Out of the darkness of her own experiences with KD came Dee’s burning desire to bring a light into the lives of other people affected by it, so that their journey to diagnosis would be shorter. She became determined to raise awareness among doctors—firstly of the importance of diagnosing KD early, “within four to five days”, and secondly of the need for long-term follow-up of children who have had damage to their heart. A 2020 expert consensus statement says “every child who has coronary aneurysms following KD… requires lifelong uninterrupted follow-up by a cardiology team within a specialist KD clinic”.² Dee also points out the usefulness of calcium scoring (CAC) as a screening examination for patients with a history of Kawasaki disease.³

“We now know that if you haven’t had heart damage from KD, you’re pretty much in the clear. But if you’ve had the damage (as Nadia does because of her late diagnosis), you may have further problems in adult life,” Dee says. She believes that doctors, in general, aren’t aware enough of this. “Going for general consultations with Nadia after KD, multiple times, doctors had to get an encyclopaedia and look up what mucocutaneous lymph node syndrome (Kawasaki disease) is.”

Dee sees immense value in how the annual KD Parent Symposium brings parents up to date (footage from these can be viewed on YouTube) with the latest research into Kawasaki disease. She hopes to use the events hall in her charity’s building in London as a UK venue for specialists to deliver seminars on KD. “My doors will be open to parents to educate them. And then the parents will be educating the GPs,” she says.

Dee hopes that this access to knowledge will empower parents, so they do not have to deal with as much uncertainty as she had to back in the early nineties. “It was really tough thinking Nadia would grow up into adult life and we would have very little knowledge to give her about whether she would live a healthy life,” she says.

Supporting families and researchers

Dee feels great empathy for all parents who have a child with KD, but she says she is particularly attuned to how some families’ individual circumstances can intensify their hardship. “I just feel that certain things have happened to me in my life so that I can understand the needs of others,” she says, reflecting on how her family was forced to flee war-torn Northern Cyprus in the 60s while she was still a baby.

“It was three weeks on a boat, with a bunch of other refugees—families with lots of kids and a few bags, whatever you could gather—passing through all these different countries with hardly any money. Then we were placed at a derelict church in North London with hundreds of other people for weeks before we were properly homed. I can’t imagine what my mother went through with four kids.”

Later years were not always kind either. In her teenage years, Dee’s love of clubbing drove a wedge between her and her family—her Turkish roots made being a club dancer a taboo, yet this phase of her life inspired her to become a clubwear designer. Then as a young mother Dee had to deal with Nadia’s delayed diagnosis and the complications that came from that, caring for her while grafting to pay her overheads and establish herself as a designer. Recently, Dee has had her own health challenges too with chronic lymphocytic leukaemia (a slowly progressive form of leukaemia), which was treated with chemotherapy.

With the perspective on trauma that these experiences have given her, Dee passionately believes that parents who are dealing with Kawasaki disease should not have to struggle alone. In 2022 Dee began a campaign to give small grants to families who experience financial difficulty because of Kawasaki disease. “What we’re trying to say is that we should have more help for mothers like these,” she says. “The economic crisis is one thing but having a sick child to care for and having to stop working on top of it is just not fair.”

“I came up with a plan to bring in the main source of income for the charity to do this work. Over the past 10 years, I have built up a project offering start-ups and other businesses space for donations in our multiple charity buildings in West London. The space comprises creative space for artists, offices and a huge event hall with free parking.”

Dee also uses her clothing collections to share important messages about Kawasaki disease: some represent hope and positivity; others emphasise how lack of awareness of Kawasaki disease impacts families.

Find out more about how Dee’s designs helped put the Spice into the Spice Girls: www.kawasakidiseaseuk.org/spice-girls-collection

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