Happy Friday Patient Worthians! We hope your Mother’s Day was as awesome as ours.
This week we have some awesome posts from our rare moms (#RareMom), those who fight their own disease every day and those who fight for their child with rare disease. And as you know, it’s also Lyme disease AND Cystic Fibrosis Awareness Month!
We have some info on how you can be involved in the Lyme Disease Challenge, a day in the life of a Lymie and the Strawfie Challenge for Cystic Fibrosis.
So sit back and enjoy this week’s Editor’s Choice!
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Mother of Little Girl with Cystinosis Describes Being a Rare Mom
PW Contributor Amanda Buck details receiving her baby girl Elsie’s cystinosis diagnosis.
What does it mean for a mother to go from having questions for why her baby is “failing to thrive”, to getting that rare disease answer? Amanda lets us know that and more in her #RareMom story.
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Why Mother’s Day is a Great Day for Reflection
PW Contributor Kathryn shares with us what Mother’s Day means to her, as she fights her rare diseases, including Periodic Fever Syndrome, POTS and Cold Urticaria.
Additionally, Kathryn gave us her thoughts on being a #RareMom in these Patient Worthy videos!
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What is the Lyme Disease Challenge?
May is Lyme Disease Awareness Month and that means we and our partners in chronic illness are bringing attention to this often neglected, potentially debilitating disease.
Check out this article on the Lyme Disease Challenge, what you can do to participate and don’t forget to check out a day in the life of a Lymie.
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Young Woman with Cystic Fibrosis Making the Most of Her 2nd Chance at Life
PW UK Collaborator Breathe With Me shared this amazing story of Georgina Compton, a young woman in her 20s battling cystic fibrosis (CF).
Georgina is working hard to bring awareness to CF, including participating in the Strawfie Challenge this month! Read her story here, why she’s participating in the challenge and what you can do to help!
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