Editor’s Choice: Donating, Battling and Healing in the Face of Rare Disease

Welcome to Friday Patient Worthians!

This week we have a PW Contribution on one woman’s battle with Stiff Person’s Syndrome. We also have a piece on using fear to serve you in your rare disease battle.

Do you know about organ donation’s role in cystinosis? You’ll find out here today! And lastly, we have another rare disease undiagnosed story!

So sit back and enjoy this week’s Editor’s Choice!


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If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation

Do you know someone with cystinosis?

If so, you should read this info on why organ donation is crucial!

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How You Can Help Rare Disease Patients Now from a SPS Warrior

PW Contributor Angela Davis tells us about her experience with Stiff Person’s Syndrome.

Read her personal story here.

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Transverse Myelitis Diagnosed a Month After Hospital Visit

The ol’ undiagnosed rare disease story is ever-too-common. But they’re important to know to emphasize the importance of education.

Check out the latest rare undiagnosed story here.

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How to Heal from Sickle Cell Disease (SCD) Fears

Being diagnosed with any rare and neglected disease can cause a stream of emotions, one of those being fear.

Read here on how to heal from those emotions.

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