Quinn's interview
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How did all start?
My first memory of my EM was during my grade 8 graduation. It was the first time I wore heels, I remember my feet feeling hot and were bright red at the end of the night.
Do you already have a diagnosis? How long did it take you to get it?
I deferred from looking for medical help or receiving a diagnosis for a long time. I suffered in silence, putting my feet in cold water often and had problems working out without flaring. I saw my neurologist for my migraines where I finally inquired about my condition. Because it's a rare disease, I was lucky that this neurologist had diagnosed one other person in the past. This was in 2018.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have not found a medical intervention or treatment that has worked for me yet.
What has been the most useful thing for you so far?
I purchased 'diabetes cold slippers' from amazon and keep them in the freezer. When I have a flare I either run cool water over my feet or put the booties on.
What have been your biggest difficulties?
I often feel embarrassed about my condition. It is unsightly to see bright red and swollen feet! I am a young person and I cannot wear heels or most types of shoes in the summer or on vacation. The pain I feel is scalding, and takes your breath away. If I am having a bad flare all I can do is sit and cry and pray it will pass. It feels like someone has a hot iron and is pressing it to your skin, or like the worst sunburn you've ever had.
How has your social and family environment reacted? Have your social or family relationships changed?
Many people do not understand this condition. I sometimes have to move slower than most people my age (and I love to travel).
What things have you stopped doing?
Mostly working out, I grew up running track despite my feet burning and now I can barely go on walks in the evening in the summer time. I have to think about the weather often (as high humidity causes flare ups).
What would you like to do if you didn’t have your condition?
I would like to practice hot yoga and run. I would love to be able to run a marathon.
