Editor’s Choice: EDS Teddy Bears, Life-Saving Wives, Gender Identity, and Rare Disease

Happy Valentine’s Day!

Whether you’re looking forward to spending tomorrow with a partner, or with friends and family, we hope you’re having a good week. Today, we’re highlighting an about a wife who diagnosed her husband’s rare condition, followed by a story about teddy bears that bring comfort to kids with EDS. After that, we have an interview from PW Contributor Rebekah Palmer, and and orphan drug designation announcement.

Sit back and enjoy this week’s Editor’s Choice.

 

Wife Successfully Diagnoses Her Husband’s POEMS Syndrome Before Doctors Did

The doctors suspected GBS, but his wife knew something else was going on. Have you ever felt your doctor was missing something? Check out this story.

 

Teddy Bears with Feeding Tubes help Children with Ehlers-Danlos Syndrome Adjust

EDS patient Fiona Allen makes teddy bears with medical equipment to help children adjust, and to spread awareness.

 

Mika: Honest, Whole, and Valuable

Two women from the cystinosis community discuss medical journeys, gender identity, and more.

 

Orphan Drug Designation Granted to Therachon’s Drug Apraglutide by FDA for Treatment of Short Bowel Syndrome

If you’re waiting for new treatments for short bowel syndrome, good news may be coming your way.


Do you have a rare disease experience of your own? Share with us here.

Share this post

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

What are your thoughts on being a rare disease advocate? Share your stories, thoughts, and hopes with the Patient Worthy community!

Close Menu