Editor’s Choice: Start November with Rare Patient Stories

Happy Thursday, Friends!

Welcome to November! This week we’re highlighting stories two stories from rare patients in the Czech Republic. We also have a story about two girls in South Africa who bonded over their rare condition. Last but not least, we have research news for Fabry disease patients.

 

“I First Have to Explain it to the Doctors:” Tetrasomy X, a Rare Patient Story From the Czech Republic

 

What do you do when you have a disease so rare your doctor hasn’t heard of it? A mother from the Czech Republic shares her story.

 

“When You Have to, You Can:” a Myasthenia Gravis Story From the Czech Republic

 

A sudden life transition caused one woman to show unexpected strength.

 

Two Best Friends With Primary Immunodeficiency Meet for the First Time in Cape Town, South Africa

 

Two girls met online and found they had a lot in common… including a rare disease.

 

Could These Rapidly Aging Cells in Fabry Disease be Reducing Patient Lifespan?

 

Researchers come a little close to understanding the relationship between this type of cell and Fabry disease.


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

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