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Showing posts from April, 2018

#NPAW 2018 Meet Ben Edwards A Youths Interview With EPP

#PAW2018
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Ben Edwards    Age: 10
How old were you when you were diagnosed?
I was two years old. Do you remember your first flare/reaction?
I was at the beach building a sand castle near an umbrella, I was getting really agitated.I then started to feel horrible and then bad, I looked down at my hands they were swelling up and turning to a red & purple color-like a rash.
What did it feel like to you?I felt like everything I was touching was burning my skin.
What things help you feel better? (cool water, ice, shade, bath, clothes)
Having a wet substance/cloth around my hands or anywhere my body hurts.I have even used wet socks before and now I use the Frog Toggs those stay cold longer.Putting it under water and blowing on it when I don’t have water near me.Also using a fan.
How long does it take before you start to feel better?A few days, but my first and worst reaction took a week for it to go away.
What kind of clothing/trends do you wear when you go outside or in bad lighting?
I always wear…

#PAW 2018 Medical Moment~ VP Variegate Porphyria

#PAW2018


Variegate porphyria



Other Names:
Porphyria variegate; VP; Porphyria, South African type; See More
Categories:
Congenital and Genetic DiseasesKidney and Urinary DiseasesMetabolic disordersSee More Summary Listen Variegate porphyria is a form of hepatic porphyria most common in the white South African population. This autosomal dominant disorder may produce acute attacks (as in acute intermittent porphyria) as well as skin photosensitivity.[1][2] The condition is caused by mutations in the PPOXgene which lead to deficiency of the