Chair of @PCD_UK. Day job = NHS researcher. Unhealthy attachment to Gilmore Girls, Wales & coffee. Love mountains, lungs permitting. Views my own.🏴
Joined July 2014
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Picture this, you've spent years wondering why you have constant infections. After 40+ GP appointments, you get referred for #PCD testing, at a centre 6 hours away. You cannot afford the travel & hotel. What do you do? Here's where we step in @PCD_UK 👇 justgiving.com/campaign/pcd-…
People with PCD: please fill out this survey! Great to have an opportunity to shape the future of research in PCD and hope it leads to new avenues being explored (spoiler alert: it includes gastroenterology, which people often ask @pcdsupportuk about!) #pcd #participatoryresearch
Study call: Patients’ research priorities for primary ciliary dyskinesia
Tell us what YOU think research in #PCD should focus next!
For info & participation link in several languages go to beat-pcd.squarespace.com/pat… @beatpcd @mgoutaki @RespiFIL @PCD_UK @PCDFoundation @PCDAustralia
Just one of the many ways we make your donations count 👇
✨ PCD Support UK helps provide physio packs for children with PCD✨
🗂 The £150 funding provided to @LeedsHospitals
was able to provide 80 packs filled with blowing games, single-use equipment, and a tiny information card for children with PCD and their families!
Lucy Dixon retweeted
Calling all paediatric physiotherapist 🗣️
Come join our amazing data science team to develop and validate new digital biomarkers 🙌
Apply today 👇
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A wee personal story of health, happiness and balance!
It's time to play CSI Royal Brompton after recently growing 2 pesky bugs belonging to a group called Non Tuberculous Mycobacteria. (NB Sending postal sputum samples is an absolute godsend) 🤟✌️
#PCD #Infection #RareDisease
We hired a camper: I was worried about camping after 4 weeks of hospital admissions already this year.
I know some people choose not to do certain things in case of risk to health, but live music & outdoors is so key to my happiness that I don't think I'd be who I am without it
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So here I am back home in my #churnups t-shirt, thinking about @foofighters tour next year, whilst looking forward to getting rid of the latest haul of bacteria infiltrating my lungs. It's all about balance 🤟💅 #pcd #raredisease
Thanks for an unforgettable time @glastonbury
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🫁The thing with #PCD is that you can do everything right & it's still not enough. I tell this to parents and fellow PCDers all the time, & yet a phone call from hospital still has me asking what I could have done differently. Channeling sad dog vibes...
Every year spates of coastal deaths around the UK fill me with dread. I lost my dad and uncle on what appeared to be a calm, sunny day on 21 June 2006, when they were swept away by a 'freak wave' whilst looking for somewhere to fish.
Most of us visit the seaside at some point in our lives, yet aside from lifeguards and perhaps serious swimmers, I'd bet the majority of us have no idea how to judge where is safe to swim, how manage in a riptide, or what to do if you get into difficulty.
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@RNLI do a fantastic job and have produced lots of thoughtful age-specific and inclusive educational materials around water safety.
Please have these conversations with your friends and family 👇
rnli.org/youth-education/edu…
#RNLI #Sea #Beach #SeaSafety #WaterSafety
Medmin: My hospital discharge summary was inaccurate but the doc said he was new and didn't know how to make edits, so couldn't change it. This was sent to my GP surgery who have now taken 2 of my essential meds off my repeat, and are refusing to put them back on. Ffs 🤯 #PCD
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Lucy Dixon retweeted
At the @PCD_UK medical board in @TheBMA where I display a poster about the use of AI for the diagnosis of PCD. @RBandH @ImperialNHLI @NIHRresearch @beatpcd
It's been a rough few months, with nearly 4 weeks of hospital admissions since end of Jan. Here's me getting my last dose last night before heading home! I can't thank the amazing staff at @RBandH enough. Also loving my new accessible @Portoandbello hoodie! #PCD #SpecialistCare
It has been a huge joint effort to get to this point: the first fully decentralised non pharmacological clinical trial in #PCD. Thanks to the amazing team @aparitohealth (particularly @ferrer_mallol & @elinhafdavies) for believing in us. If you have PCD check it out! 👇#research
PCD-ENGAGE is now live! And we want you to get involved in the first ever patient-led clinical trial in #PCD!
Head to our website to sign up now: pcdsupport.org.uk/get-involv…
@aparitohealth #PCDENGAGE
Lucy Dixon retweeted
#DidYouKnow
@BBCNews has a dedicated #RareDisease page!
Read rare disease stories from across the nation in one, centralised place
bbc.co.uk/news/topics/cz45e2…
Lucy Dixon retweeted
How exciting! @ReCodeTx have developed an mRNA treatment that hopes to restore ciliary function in patients with pathogenic mutations in the DNAI1 gene
We have everything crossed that the Phase 1 trial goes well! Read more 👇👇
recodetx.com/recode-therapeu…