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PTEN UK & Ireland Patient Group

PTEN UK & Ireland Patient Group

PTENUKI is a patient group which aims to help and support patients, carers, families affected by PTEN

PTEN UK & Ireland Patient Group

11 hours ago

PTEN UK & Ireland Patient Group
🧬 Just received a PTEN diagnosis or supporting someone who has? Check out this PTEN Power Hour Q&A session, recorded earlier this year! This video is filled with answers to common questions and essential info to help you understand the journey ahead. You can watch anytime: buff.ly/4f7EsMe 💻Whether you're newly diagnosed, a caregiver, or simply want to learn more, this session offers practical knowledge and reassurance from experts and people with firsthand experience.And stay tuned—our November PTEN Power Hour is coming soon! Don’t miss this next chance to connect and learn! #PTENPowerHour ... See MoreSee Less

PTEN Power Hour PTEN Q&A and info for those newly diagnosed 28 Feb 2024

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PTEN UK & Ireland Patient Group

2 weeks ago

PTEN UK & Ireland Patient Group
As we wrap up PTEN Awareness Day, we want to say a huge thank you to everyone who participated in and followed our art and photo competition! 🌟 We hope you enjoyed the incredible entries and gained a deeper understanding of the daily challenges and triumphs faced by those contending with PTEN.The creativity and resilience shown by our community have been truly inspiring, and we’re so grateful for the opportunity to share these powerful stories through art and phtos. Together, let's continue raising awareness and supporting one another.Thank you all for being part of this important day! 💙#PTENAwarenessDay ... See MoreSee Less
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PTEN UK & Ireland Patient Group

2 weeks ago

PTEN UK & Ireland Patient Group
🎉✨ PTEN Awareness Day - Announcing Our Art Competition Winner! ✨🎉We are thrilled to announce that the winning entry of our PTEN art competition is from the incredibly talented Niamh! 🌟Diagnosed with PTEN as a toddler, Niamh’s journey has involved many challenges—ASD, epilepsy, thyroid nodules, and countless hospital visits. But perhaps the most impactful has been the significant overgrowth in her shoulder, arm, and hand, which has required surgeries, physical therapy, and caused ongoing pain and functional difficulties.In her art, Niamh found a way to turn frustration into beauty. By exploring the anatomical differences between her hands in great detail and using both to create her work, she was able to reframe something that once brought only pain (although it does come in handy for winning arm wrestling contests! 💪).Her entry includes stunning pieces: a charcoal sketch of her post-surgery X-ray, hand photos, a handprint and feather sketch, and an incredible clay sculpture crafted layer by layer. These artworks powerfully express her resilience and creativity.As the winner, Niamh has won a £100 Amazon voucher! 🎁 Please contact us at info@ptenuki.org to claim your prize!Let’s celebrate Niamh’s inspiring achievement! 🌸👏 Thank you, Niamh, for sharing your beautiful art and your story with us all. #PTENAwarenessDay ... See MoreSee Less

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PTEN UK & Ireland Patient Group

2 weeks ago

PTEN UK & Ireland Patient Group
📄✨ PTEN Awareness Day - Fifth Art Entry! ✨📄This powerful photo was submitted by the mum of a little boy with PTEN, Elijah. It captures the overwhelming amount of paperwork that comes with managing his PTEN diagnosis and the many appointments that follow. 🏥📚It’s a striking reminder of the behind-the-scenes effort families put in to support their children, showing the strength and dedication of parents like Elijah’s mum. Let’s give a round of support to all the caregivers working tirelessly for their loved ones. 💙#PTENAwarenessDay ... See MoreSee Less

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