Editor’s Choice: Powerful Purple Crayons and Supermoms

Welcome to Friday Patient Worthians!

This week we have stories on cystinosis and super moms with sickle cell!

Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an inspiring woman with pemphigus and pemphigoid submitted her writing to republished by us, right here on Patient Worthy.

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



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The Power of the Purple Crayon for Cystinosis Research

Cystinosis can be a devastating and challenging disease.

Read about this little girl’s wish for the rare disease.

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A bird? A plane? It’s Super Moms with Sickle Cell Anemia!

What happens when you mix one strong lady and a rare disease?

Supermoms with Sickle Cell! Check out her story here.

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The Story of Dystonia and a Family Event

This article has a must-see video on dystonia.

It also has details of an upcoming Chicago dystonia event! Read more here.

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Dental Student Awareness: Boston University

Rebecca Oling, MLS suffers from a rare and incurable skin condition.

She’s working to educate not just the general community, but the medical community to support early diagnosis. Check out her article here!

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Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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