Editor’s Choice: Staying Strong, Fighting for Treatment, and Feeling Vulnerable- Just Another Day in the Life of Rare Patients

Happy Father’s Day Weekend Patient Worthians!

This week we have an amazing essay written by CMT Warrior Sarah Magno regarding her personal experience overcoming rare disease obstacles. We also have some good news on the tardive dyskinesia front!

The UK is now fighting for access to Orkambi. We have the scoop for you and how you can help. Lastly, we have a personal story about the vulnerability of families battling rare disease.

So sit back and relax, and check out this week’s Editor’s Choice.

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A New, Better Option for Tardive Dyskinesia

The cause of tardive dyskinesia in the first place, is shocking.

Thankfully, promising treatment developments are on the rise.

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Rare Patient Spotlight: Young Woman Stays Strong in the Face of CMT

PW received an amazing essay by a young woman battling CMT. She manages to stay active and has a clear zest for life!

Get inspired here!

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UK Cystic Fibrosis Sufferers are Fighting Hard for Orkambi: Here’s How You Can Help

CF patients in the US most definitely have heavy financial burdens for their rare treatments. [Insert stereotypical US healthcare comment here]…

But at least we have access to the treatment. What if your government won’t even let you have a treatment that could save your life? Socialized medical care supporter or not, UK CF patients are in a difficult spot. Read more here.

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The Vulnerability of Rare Disease Families

PW Contributor Denise is a rare mom who is no stranger to the difficulties of caregiving and coping with rare disease.

Read her thoughts on rare disease families here.

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

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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