Happy end-of-June, readers!
A lot of people are getting ready for the fourth of July right now. However, as a lot of the rare community knows, not everyone is able to eat hot dogs and hamburgers this Wednesday. This week we’re bringing you a PKU diet challenge (which we participated in). We also have a story about a mom advocating for her ultra-rare daughter, a mom who had to figure out how to use a lot of medical equipment in a short period of time, and an interview with parents who talk about raising kids while facing the challenges of Cystinosis.
Sit back and enjoy this week’s Editor’s Choice.
The NSPKU’s PKU Diet for a Day Challenge: Can YOU Handle It?
Think you can eat under 10 grams of protein a day, like PKU patients do every day? It’s harder than it sounds.
Check out the challenge here and PW’s shot at it here.
This Mom will Stop at Nothing to Cure MSD
Amber’s daughter, Willow, is one of the few people in the world with MSD. After a whole diagnostic odyssey to figure out why Willow was sick, Amber then started a foundation to figure out what to do next.
Read about it here.
Parenting and Cystinosis: A Rare Patient Interview
Jim and Melea share an inside look at what it’s like to make parenting choices when one parents has a rare disease.
Read about it here.
Medical Equipment We Didn’t Know Existed Before We Entered the Rare Disease World
PW Contributor Dee Crompton talks about the wild world rare parents are thrown into, full of “oxygen levels, ventilators, nebulizers, humidifiers, Bi-PAPS, CPAPS, feeding tubes, standing frames, sterile fields, suction equipment, intravenous infusions, and strange looking apparatus with strange sounding names.”
Check out her story here.
