Editor’s Choice: Ringing in the 2018 with Awareness

Welcome back, Patient Worthians!

We’re starting out the new year with stories of strength and awareness. This week, we have an article about a man with CSF leak, whose life changed dramatically in a short period of time. We also have news about the role that exercise plays in treating Parkinson’s disease. We have a mother who fundraises for NKH gene therapy research with creative tactics, and family in Singapore, who struggle with Gaucher disease medical bills.

Sit back and enjoy this week’s Editor’s Choice.
It May Surprise You How CSF Leak Changed David’s Life

One day David felt sick while kayaking, and soon after, everything changed. He’s now Chairman of the CSF Leak Association.

Read all about it here.

Research Suggests New Suspect for Parkinson’s Disease Treatment

People have suspected that exercise may aid Parkinson’s patients, but researchers have finally figured out why.

Read more about the story here.

Mother of Child with NKH Writes Children’s Book To Fund Research

When a mother learned that her son had NKH, she decided to fundraise for a cure by writing the children’s book Eva the Adventurer, which tells the story of a curious girl who can do anything she sets her mind to.

Read more about the story here.

Family pays $24,000 monthly to keep their child living with Gaucher disease alive

A family in Singapore struggling with astronomical medical bills sheds light on a problem many caregivers face.

Read the story here.

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

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