Editor’s Choice: How Amyloidosis & Being Mixed Race Don’t Mix, Awful Sentences and a Tale of Brotherly Love

Happy Easter Weekend Patient Worthians!

And if you don’t celebrate it, Passover is only a month away. If you don’t celebrate either one, then why not celebrate life?! This week we have a touching story of brotherly love that will surely lift your spirits.

We also have a personal patient story on battling dystonia, another patient experience on celiac disease and dystonia, and a post on how being mixed race can raise complications to an already complicated disease.

Enjoy this week’s Editor’s Choice!





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Losing 150 lbs and Living with Dystonia

Patient Worthy Contributor Tom Seaman shares how getting the flu helped the change his entire attitude toward battling his rare disease.

Check out this motivating story on how Tom transformed himself, and his life with dystonia.

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Why Being Mixed Race Sucks When You Have Amyloidosis

Being genetically diverse is a beautiful thing. But when you might need a donor, finding a genetic match could be incredibly complicated.

Read about Tracy’s harrowing search for a donor to help fight amyloidosis and multiple myeloma.

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He Ain’t Heavy, He’s My Brother

Five year old Luke was so excited to get a little brother! However, at 10 months old, Luke’s little brother Titus was diagnosed with Non-spastic Quadriplegic Cerebral Palsy.

Luke vowed to be a shining light for his little brother, helping him to overcome his disease and make great strides. Read this inspiring story of brotherly love for a Friday pick-me-up!

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My Least Favorite Sentence Ever

If you have a rare or chronic disease, the seemingly harmless question “How are you?” can be most difficult to answer.

PW Contributor Amber, a mother and wife living with three rare diseases, shares how she feels about answering this otherwise casual question.


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