Dubai Dubai-based Lynn Ziad Ghaziri is 10 years old. She has come to be known as the “Girl on Fire” as she burns in her own skin. Suffering from a rare disease called Erythromelalgia or EM, her hands and feet suddenly begin to flare. As her skin swells and turns red hot, she writhes in excruciating pain. She is utterly helpless as her toes and fingers become stiff.
Her “firefighter mum” Youmna Oraybi Ghaziri says it all began shortly after Lynn’s eighth birthday. “My princess started complaining of pain in the soles of her feet. She attended classical ballet classes twice a week, so I put it down to the new steps she was learning. But her skin would redden for hours, cool down for a short time, only for the fire to rage 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.”
- Lynn Ziad Ghaziri, EM Warrior
Youmna said she and her husband approached several doctors locally but none could tell what was wrong. After many sleepless months, they finally arrived at a diagnosis, thanks to a pediatric neurologist in Boston.
She said EM (see below) has no specific cause or cure. “Management, we were told, was on a case-to-case basis. But it was anybody’s guess if anyone else was suffering from EM in the UAE. So little was known about the disease that it was for us to figure out what it entailed from our day-to-day experience.”
What is EM?
Erythromelalgia or Man on Fire disease is a rare condition that affects the feet and hands. It is characterised by intense burning pain of the extremities, severe redness and increased skin temperature that may be episodic or almost continuous. Its occurance, which is one in 100,000 in the US, remains unknown in the UAE and the region.
Main triggers
With motion and heat being the main triggers, Lynn’s movements had to be restricted. She was also forced to drop out of regular school and do homeschooling.
But far from being cowed down by the situation, Lynn and her mother launched an inspiring campaign - #Red Hand Challenge - to raise awareness about EM. well before the world marks Rare Diseases Day on the last day of this month.
- Youmna Oraybi Ghaziri, Lynn's mother
Youmna, who started a blog and a Facebook page to create awareness about EM, said the challenge began in her residence last December with a few friends. “Lynn came up with the idea of the red hand to symbolise how she and other EM warriors felt.”
What is the challenge about?
Basically, people who take up the challenge are expected to dip their hands in red paint or ketchup and make an imprint of them public on social media. Every time a post is made, three more people are tagged so they know they have to take the challenge forward, along with the hashtag #RedHandChallenge. Already, there are over 400 posts on Facebook and Instagram, with support pouring in from friends, family and complete strangers from all corners of the world.
The experience has been a huge learning.
“Pain doesn’t define who you are but it could mould you in unexpected ways. I’ve seen it happen with Lynn. The Man on Fire Disease has brought the best out of her. She has gained strength to face the daily pain and uncertainties. My heart aches to see her physical limitations, but she has acquired another level of discipline, where she has to accommodate to certain environments, give up some activities and replace them with others,” said Youmna.
Lynn, who does homeschooling, is full of compassion. Her mother said, “Lynn’s mind is always racing to find ways to spread joy and be of help to others, and she amazes me with some of her ideas. So far she has donated her long beautiful hair to cancer patients, and on her ninth birthday, she donated all her gifts to kids with special needs. She is also dedicating songs to others who happen to be facing a challenging time. I believe it’s her way of feeling helpful to others within the capabilities of her young age.”
YOUSPEAK:
Do you know of someone with EM or any other rare
disease? What is their experience?
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