Editor’s Choice: How Dystonia Feels, POTS and Sugar, and More!

editor's choice

Welcome to this week’s Editor’s Choice Patient Worthians!

This week, we want to spread some info on what it feels like to actually live with rare disease. Not just about the administrative side of things, but about the physical manifestations of these ailments.

As Myasthenia Gravis Awareness Month closed out last month, we still want to talk about the challenges this disease faces, including the most recent news on a promising MG treatment. Lastly, how can “sugar” negatively affect your rare disease? Check out the posts below!

We hope you enjoy this week’s Editor’s Choice!


Tom Twisted 2 pics


What Does Dystonia Feel Like?

PW Contributor Tom Seaman opens up to us about how it actually feels to have dystonia.

His candor and honesty about the condition has the power to open our eyes to a more empathetic view of this rare disease.

Source: www.pixabay.com

How To Eliminate “Sugar” From Your Awareness Plan

Dysautonomia, like any rare condition, sucks. Sometimes, we are tempted to pretend like everything feels fine because we don’t want to be negative– and there is value in that.

But when the time and place comes for us to speak about our rare diseases, there is even more value in not sugar-coating it and letting others know the ugliness of chronic illness.


Sad News for a Promising New Myasthenia Gravis Treatment

A recent clinical trial that expected to have significant results for the treatment of MG, ended up having not-so-significant findings.

Read more about the results here and where to find more clinical trials for MG.


Ankylosing Spondylitis: Do You Know These 5 Things?

AS has a few tell-tale signs and symptoms.

Check out this article detailing the different aspects of this systemic arthritis.




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