Editor’s Choice: Perseverance in the Face of Rare Disease

Happy Friday Patient Worthians!

Do you wish you can take a day off from your rare disease? What about when it seems like it’s getting to be too much and that the pain will never end, what do you do then?

This week, we have posts on taking a day off from cystinosis, perseverance in the face of CRPS, the anatomy of an HAE attack and talking about cushing’s.

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

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Why Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…

Chronic illness sucks. In the least, it’s a constant annoyance. Other times, it feels like a death sentence.

Read here on ways to take full advantage of the much-needed good days.

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The Anatomy of an HAE Attack – Part 1

PW contributor Teresa details a very painful part of her rare disease: the HAE attack.

Check out the four phases here.

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Why Perseverance is the CRPS Secret Ingredient

Chronic illness like CRPS can destroy a person’s will to keep moving. It can become a spiral of wanting to give up, feeling aimless or like a burden.

But perseverance can help stop the negativity. Check out more here.

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Why Your World May Be Better If You Talk About Cushing’s

When living with chronic disease, that feeling of isolation can creep it’s way in, making a patient feel alone.

Talking about your disease with other sufferers can help.

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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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