MyPurplePatch 💙

SOUND AND VISION - My favourite music, books and TV from Q1 2026 including the new RAYE album just released - open.substack.com/pub/anthonyph/…

Do you snore… or live with someone who does? It’s not something most of us think about but it could be quietly impacting how we feel during the day. Energy, focus, mood and even how stressed we feel. In this weeks new episode of my 'Feel Better, Live More' podcast, James Nestor (@MrJamesNestor) shares why nighttime breathing might be one of the most overlooked pieces of our health, with over 60% of adults breathing through their mouths at night. Sometimes, the signs are subtle. Feeling tired despite a full night in bed. Waking up groggy or being told you snore (even if you don’t quite believe it!). This conversation is a powerful reminder that small, foundational habits can have a much bigger impact than we realise. You can listen to our full conversation on how to change the way you breathe in episode 644 of my 'Feel Better, Live More' podcast.

In this wks #blog post, #photography from a rare #sunny February day after a very wet start to 2026, and the dichotomy of #psychological wellbeing vs how #Fibromyalgia makes you feel.🤔 #fibrolife #menwithfibro #photographer #spoonie #chronicillness fibroandphotos.wordpress.com/?p=14484

My take on the new blockbuster book by Tom Bower - REVENGE WAS VERY GOOD, BETRAYAL IS EVEN BETTER open.substack.com/pub/anthonyph/… #TomBower #Betrayal #Revenge

In this week's post I share that despite knowing how to manage our #Fibro & #centralsensitivity symptoms, the unexpected will push you into a flare up. #fibromyalgia #spoonie #fibrolife #chronicillness #menwithfibro fibroandphotos.wordpress.com/?p=14386

My take on why Rare Disease Day is so important - open.substack.com/pub/anthonyph/… @GeneticAll_UK @rarediseaseapps @RareRevolutionM @RareDiseases @eurordis @rarediseaseday @rarepatientvoic @ITPSupportAssoc #RareDiseaseDay #ITPAware

@TheBabalicious Brighter next week here - hooray !

@Patch1Purple Thank you, let's hope so , I've had enough of the rain and damp gloomy weather.

Dear Fibromyalgia, Today I feel really tired, like I haven't slept but I did. My eyes are very sore and heavy, feet are swollen, hand very sore, back pain, I could go on and on. Fibromyalgia you are showing your true colours today....

AN IMPORTANT RARE PLATFORM ANNOUNCEMENT - A FREE NEW SUITE of APPs for anyone rare or caring for rare check out the story of how it came about open.substack.com/pub/anthonyph/… @GeneticAll_UK @rarediseaseapps @rarediseaseday @NoInvisibles @RareRevolutionM @ITPSupportAssoc #RareDiseaseDay

Great and proud to attend the #RareDiseaseDay Parliamentary reception in #CardiffBay, last night #Networking, #Ataxia awareness and meeting #RareDisease colleagues and friends #Equity for #Rare #health conditions

@APainPrincess Wise words indeed. Thanks for sharing.

“You don't always have to pretend to be strong, there is no need to prove all the time that everything is going well, you shouldn't be concerned about what other people are thinking. Cry if you need to, it's good to cry out all your tears…” ~ Paulo Coelho #MentalHealthMatters

Last night the community united in Wales for #RDD2026 to celebrate progress, listen to powerful and inspiring voices, and champion equity for rare conditions. Find our new RDD2026 publications on our RDD 2026 web page 👉 ow.ly/FtOy50YmsOP #Rarequity #RareDiseaseDay2026

For #RareDiseaseDay2026, the University of Edinburgh's Institute of Genetics and Cancer is hosting 'AI and Rare Disease: Discovering the Missing Pieces' hybrid (online/in person) event from 17:30 on Wednesday 4 March 2026. Register your place: ow.ly/O6G850Ymvyx

💜 #Fibromyalgia #MECFS #PTSD #LongCovid #Spoonies #ChronicPain #MentalHealth #Disability #InvisibleIllness

Two sneak peeks at switching between multiple related genes, live now for testing but not unlocked yet in public UI SGCA/B/D/G exoneditor.com/?gene=sgca%2Cs… OCA1/2/3/4 exoneditor.com/?gene=oca1%2Co… #raredisease #RareDiseaseDay #exon

Just added my #inlinkz link: http://fibroandphotos.wordpress.com/2026/01/21/any… here: fibrobloggerdirectory.com via @inlinkz #Fibromyalgia #photography #spoonie #menwithfibro #fibrolife

LAUNCHING TODAY: Our new information sheets help to explain inequity in the context of rare conditions. Download and share them today: ow.ly/lSyI50YmtLu #RareDiseaseDay2026 #RDD2026 #Rarequity

In the lead up to #RareDiseaseDay2026 we’re proud to share a powerful guest blog from Dr Huw Miles, as he reflects on what it means to receive a rare diagnosis, the emotional impact on families, and why fairness and equity in rare condition care matters: ow.ly/M5ml50YmlJP

🎙️ In Rare Disease Day week, #EURORDISRareOnAir shares its final episode, Stephanie’s story. Her daughter’s fight with #LIG4 syndrome shows a mother’s love, courage, and hope through misdiagnoses, travel, and the search for a cure. 💜 🎧 Listen now: eurordis.org/rare-on-air/