THE FIREFIGHTER MUM
Lebanese expat Youmna Ghaziri got the shock of her life when her eldest daughter Lynn was diagnosed with Erythromelalgia (EM) at the age of eight. Commonly known as the ‘Man on Fire’ syndrome, the condition causes Lynn’s skin to swell and turn hot, and her fingers and toes to become numb and her hands and feet to burn with pain.
Until then, Lynn was a happy little girl attending regular school in Dubai. ‘Shortly after her eighth birthday, Lynn started complaining of pain in the soles of her feet. She attended classical ballet classes twice a week, so I thought it was due to dancing. But the reddening went on for hours; cooling down for a short time, only to burn again. I would put the air-conditioner at the coldest temperature until it felt like we were living in an igloo. Lynn would dip her feet and hands in cold water but the water would get warm from her burning skin,’ remembers Youmna, who has been living in Dubai for the past four years.
The flares began to increase, triggered by simple movement and temperature change. Lynn kept missing school because of the unbearable pain.
‘We searched for months for a doctor who would diagnose her properly. We travelled with her to meet doctors around the world. Finally a doctor in Boston identified that she had EM. The bigger shocker was when we found out it was incurable but can only be managed to ease the pain,’ says Youmna.
EM is a condition that affects one in a 100,000 people and unfortunately, there are no other registered similar cases in the Middle East or Arab world. Youmna had no choice but to pull Lynn out of school and start homeschooling her.
One day, she and Lynn were brainstorming on how to bring awareness about such a rare disease. ‘Lynn herself came up with the idea of painting our hands red and challenging others to do it. The red paint symbolises the red colour of her skin while she’s flaring.’
Thus the concept of the Red Hand Challenge (RHC) was born. Participants have to dip their hands in Red paint (or ketchup), make an imprint on a white paper plate (or any white background) and post it on social media while tagging three other friends along with the hashtag #RedHandChallenge.
‘We encourage people to be creative about it with videos. They can also talk about their own experiences with other rare diseases and help in spreading much needed awareness’, says Youmna. Already,
Youmna’s husband Ziad Ghaziri is the cornerstone of the RHC campaign. Besides spreading the word, he takes care of most of the logistics whenever they are hosting an awareness campaign. ‘He even babysits Lara when Lynn and I are out at awareness events.’
Youmna also started a blog called the Fire Fighter mom where she pens down her experiences to share with the world.