Over the past eight months I have been replying to messages of family and friends around the world and basically functioning according to two different time zones.
Answering questions about erythromelalgia (EM) has proven to be hard. How can you explain about a rare disease that even doctors find hard to explain or understand?
So one sleepless night, a conversation haunted me. I had been thinking how little awareness there is about erythromelalgia, which is the main reason it often goes undiagnosed. What if EM was given a voice? The following fictional interview with EM is the result of that long sleepless night.
Reporter: Hello and thank you for doing this interview.
Guest: Thank you for inviting me under the spotlight.
Reporter: Do you mind telling our readers your full name?
Guest: Erythromelalgia, but people call me EM for short.
Reporter: Oh what an interesting name! How old are you EM?
Guest: Well you wouldn’t believe it if I told you, but I’ve been around since the late 1800’s.
Reporter: No way! I would have never guessed! How come you are not so famous already?
Guest: I’m unique I guess. My talent is so rare, not many understand it, not even experts!
Reporter: For those who don’t know about you yet, can you share with us your talent?
Guest (smirks): I was hoping you would ask. I can make people flare.
Reporter: Flare? What’s so special about that?
Guest: Flaring makes people feel like they’re burning alive in their own skin, without even knowing what hit them.
Reporter: Oh! That sounds intense!
Guest: It is very much so. The trick is causing them to flare badly, until they give up everything.
Reporter: Can you be more specific?
Guest: Easy. I start by flaring their limbs until they give up their mobility and sleep, then I let my fire rage all over their body.
Reporter: And why do you do that?
Guest: Because no one has stopped me yet.
Reporter: On whom do your tricks work best?
Guest: Everybody! Flaring affects babies, kids, teens, adults and elderly of both genders.
Reporter: Do you think there are other talents out there that can match yours?
Guest: You will have to ask NORD about that.
Reporter: What’s NORD?
Guest: National Organization for Rare Disorders/Diseases.
Reporter (feeling uncomfortably hot and flaring red): Excuse me, I’m going to have to end this interview short, I don’t feel so well.
Guest (smirks): No problem at all, I have that effect on people.
I am a blogger, philanthropist, public speaker, an agriculture engineer from the American University of Beirut, and proud mom of Lynn & Lara. My blogging journey started in 2016 after the diagnosis of my eldest daughter Lynn with the rare disease erythromelalgia. Since then, I made it my mission to spread awareness, help others get a diagnosis and encourage research to find a cure. My focus is on a community and digital campaign called the #RedHandChallenge to create awareness in addition to supporting other individuals and families dealing with rare diseases and inspiring them to positively overcome the daily challenges associated with a rare diagnosis.
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