THE PAINFUL LIFE OF A ‘GIRL ON FIRE’
▶ Lynn, 10, is raising awareness about erythromelalgia, which causes burning sensations to the head, hands and feet
During her worst episodes, schoolgirl Lynn Ghaziri feels her hands, feet and head are on fire.
The Lebanese girl, 10, is one of the few children to suffer from a genetic disorder so rare it often goes undiagnosed.
Erythromelalgia causes a burning sensation in the hands and feet, one that baffles many doctors who often do not know how to treat it.
More common in older people, Lynn’s condition will get progressively worse and, because of the pain she suffers at night, her lack of sleep forced her parents Ziad and Youmna to take her out of school.
Lynn, who lives in Dubai, is determined to make the most of her condition by helping others to recognise the symptoms and be given a correct diagnosis.
Ziad first became aware his daughter was unwell two years ago, shortly after her eighth birthday.
“One evening, she began screaming out in pain as her feet were burning,” he said. “I have a nursing background so I thought it could be an allergy. It was getting worse so we called the doctor and took her into hospital.
“She was given antihistamines and then cortisone. We went home but the pain continued.”
The family went back and forth to specialists but said no doctor was able to identify her condition.
Youmna took photos of the reactions during a flare-up to show doctors in the US and Canada, who recognised the burning hands and feet and inflammation as possible erythromelalgia.
The family learnt there is no cure and little knowledge of what causes it.
“We were linked to Massachusetts Hospital in Boston where there was a specialist physician in this condition,” Ziad said. “We decided to take Lynn to see a doctor there but couldn’t get an appointment until five months later.
“It was important to have the file of her recent flare-ups, as she looks like a normal kid otherwise.”
Lynn must wear loose, light clothing and open shoes. She also gets very tired and cannot walk long distances, so she has an electric wheelchair.
The family cannot go home to Lebanon in summer because it is too hot, and cannot visit relatives in Canada because it is too cold.
Activity, stress and extremes of temperature cause Lynn’s hands and feet to burn, so summer in Dubai is also a challenge.
Spicy food, garlic, onion, spinach and watermelon are other triggers.
Lynn’s parents struggle to control her pain by using ice packs or anti-inflammatory creams.
The condition is thought to affect about one in 100,000 in the US and much fewer in the UAE.
Lynn, who is now schooled at home, has had to swap ballet for music because of the pain in her feet, has started a social media campaign called the Red Hand Challenge to help spread the word about erythromelalgia, also known as the “man on fire” syndrome.
“It feels like I’m holding fire in my hands,” she told The National. “It’s like there are pins and needles sticking into me. It can last up to an hour and is very painful.
“I like the wheelchair as I don’t need anyone to push me, but it’s kind of weird as people aren’t very considerate. People look at me differently; it can be embarrassing.”
Attacks happen every night, making sleep difficult.
“We use ice gel packs for her, but it is recommended she doesn’t use them a lot as they can damage nerves,” Youmna said.
Lynn is registered in an online educational programme as home schooling was the only option. She studies in the afternoon and evening.
“We want to help other people with this condition who may not know what they have,” Youmna said.
“Doctors are telling people this is all in their head, and it is not being diagnosed properly. I’ve had so much support from other people around the world who have had this experience.
“It should be picked up by a neurologist and there is a growing online support. We want to help educate doctors here in the UAE and show this condition exists here.”
Youmna’s campaign encourages people to print a red hand and post it on social media to show support for Lynn’s #RedHandChallenge.
Reading is an escape for the girl, particularly mystery and adventure books. She has read more than 200 in the past year.
Lynn has started her own library for her neighbours and the community to encourage other children to read, and learn more about her condition.
“People don’t hide their reactions. They just see the chair and don’t see me for who I am,” Lynn said. “I miss being around a lot of kids who are my age.”