Rare Diseases

Biography

Biography: Youmna Ghaziri

Abstract

Erythromelalgia is a rare neurovascular condition that primarily affects, but not limited to the extremities by causing redness, heat and pain. It is often misdiagnosed, as there is no specific test for it. The challenge goes beyond diagnosis, as there is currently no cure for it, nor an effective treatment that suits all. The Red Hand Challenge is an awareness campaign initiated by 10-year-old Lynn Ghaziri, the only known case in the entire Arab world who suffers from erythromelalgia, in order to create awareness and advocacy. Inspired by her own flares Lynn challenged people on Instagram and Facebook to paint their hands red and post it on social media while using the hashtags #RedHandChallenge and #GirlOnFire and to nominate others to take the challenge. The family started dedicated Facebook and Instagram pages managed by Lynn’s mother. They encouraged people to take the challenge by posting photos and videos of themselves painting their hands red and using the hashtags and nominating others to do the same. Soon enough, family, friends and other Erythromelalgia patients took the challenge and posted on their social media pages and challenged others to follow suit. The family kept track of the hashtags and made sure to repost every single red hand post. The challenge was taken in more than 22 countries worldwide and is still ongoing. The RedHandChallenge reached people of different professions and backgrounds. The campaign picked up enough attention, that Lynn’s story was featured in three newspapers in the UAE. Lynn was also interviewed by two of the most listened to radio stations in Dubai, and hosted live on AlArabiya and Future TV. Lynn’s story was also featured on the UAE Rare Disease Society bringing more awareness to Erythromelalgia. Recently, Lynn was awarded “Inspiring Kid of the Year” by Time Out Kids Dubai.