Editor’s Choice: Confessions of Patients with Rare Disease

Welcome back to Editor’s Choice Patient Worthians!

This week we have a story on some awesome rockers that are helping out the POTS community. We also have a sweet TEDx talk on ankylosing spondylitis.

We also have an eye-opening post about narcolepsy and information on Non-24 Hour Sleep-Wake Disorder.

So sit back and enjoy this week’s Editor’s Choice!

 

 

Rockers Stirred Up the POTS Benefit for South Carolina Teen

This musician dad is doing something BIG for his daughter suffering from POTS.

Check out the story here.



You Should Read This Woman’s Narcolepsy Confessions

PW writer Erica Zahn details her conversation with a woman suffering from narcolepsy.

Read here to become enlightened!



AS: Living with Invisible Illness, a TEDx Talk

PW friend and ankylosing spondylitis warrior Charis is always trying to better the rare disease community.

Watch what she has to say during her TEDx talk here.



Midnight in the Garden of Non-24 Sleep-Wake Disorder: How Much Do You Know?

When I first read the name “Non-24 Hour Sleep-Wake Disorder,” I immediately felt like that name could be shorter… and also I had no idea what it was.

Find out about this rare disease and it’s tremendous challenges to support awareness and understanding!


Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email
Close Menu