Sharon Bee
@sharonbuckley.bsky.social
Brexit pushed Uk migrant navigating life in Spain. Mum to two phenomenal kids living with the genetic metabolic condition PKU.
https://www.researchgate.net/profile/Sharon-Buckley-2
https://www.researchgate.net/profile/Sharon-Buckley-2
Katy And The Wild Ones Christmas Charity song in aid of Endometriosis uk youtu.be/MmDjI9NEF6I?si…#endometrosisi#christmasa#ChristmasSongsgs
December 6, 2025 at 9:47 PM
Katy And The Wild Ones Christmas Charity song in aid of Endometriosis uk youtu.be/MmDjI9NEF6I?si…#endometrosisi#christmasa#ChristmasSongsgs
The last 6 wks have been the most settled time that I’ve ever had with my son! He’s been on a private prescription of Mounjaro. He’s lost an amazing amount of weight, but more than that is how calm he is without food being his 1st thought. He’s managing #pku in his stride too!
January 22, 2025 at 3:54 PM
The last 6 wks have been the most settled time that I’ve ever had with my son! He’s been on a private prescription of Mounjaro. He’s lost an amazing amount of weight, but more than that is how calm he is without food being his 1st thought. He’s managing #pku in his stride too!
Reposted by Sharon Bee
Interesting new #PKU publication exploring the use of AI to review descriptive language work. The authors find a difference between patients and controls and see a notable variation between those with high and low Phe levels.
https://doi.org/10.1002/jimd.12831
#VisualAbstract #AI
https://doi.org/10.1002/jimd.12831
#VisualAbstract #AI
December 20, 2024 at 6:08 PM
Interesting new #PKU publication exploring the use of AI to review descriptive language work. The authors find a difference between patients and controls and see a notable variation between those with high and low Phe levels.
https://doi.org/10.1002/jimd.12831
#VisualAbstract #AI
https://doi.org/10.1002/jimd.12831
#VisualAbstract #AI
Reposted by Sharon Bee
After a brief hiatus, the Footprints series returns with its 5th episode: Psychiatric Presentations of Inherited Metabolic Disease.
Apple: podcasts.apple.com/gb/podcast/j...
SoundCloud: on.soundcloud.com/KaomQhyiWmuF...
#inheritedmetabolicdisease #IMD #IEM #raredisease #footprints
Apple: podcasts.apple.com/gb/podcast/j...
SoundCloud: on.soundcloud.com/KaomQhyiWmuF...
#inheritedmetabolicdisease #IMD #IEM #raredisease #footprints
December 2, 2024 at 8:46 PM
After a brief hiatus, the Footprints series returns with its 5th episode: Psychiatric Presentations of Inherited Metabolic Disease.
Apple: podcasts.apple.com/gb/podcast/j...
SoundCloud: on.soundcloud.com/KaomQhyiWmuF...
#inheritedmetabolicdisease #IMD #IEM #raredisease #footprints
Apple: podcasts.apple.com/gb/podcast/j...
SoundCloud: on.soundcloud.com/KaomQhyiWmuF...
#inheritedmetabolicdisease #IMD #IEM #raredisease #footprints
The beach at Guardamar Del Segura is perfect for a walk at this time of year! #costablanca
December 5, 2024 at 9:30 PM
The beach at Guardamar Del Segura is perfect for a walk at this time of year! #costablanca
Reposted by Sharon Bee
"HSE could save money if it paid for this drug" #Palynziq #HTA #EnzymeReplacementTherapy #PKU
pressreader.com/article/2822...
pressreader.com/article/2822...
PressReader.com - Digital Newspaper & Magazine Subscriptions
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pressreader.com
December 1, 2024 at 8:09 PM
"HSE could save money if it paid for this drug" #Palynziq #HTA #EnzymeReplacementTherapy #PKU
pressreader.com/article/2822...
pressreader.com/article/2822...
Finished reading this month’s book swap from my sister in law. I now need to decide which of my reads to send over to her! #internationalbookswap
November 23, 2024 at 11:48 AM
Finished reading this month’s book swap from my sister in law. I now need to decide which of my reads to send over to her! #internationalbookswap
An interesting article on food noise! It will be especially interesting to see if the “food noise” dulls for my boy and helps keep him on a #pku diet.
pmc.ncbi.nlm.nih.gov/articles/PMC...
pmc.ncbi.nlm.nih.gov/articles/PMC...
What Is Food Noise? A Conceptual Model of Food Cue Reactivity
As GLP-1 receptor agonists, like semaglutide, emerge as effective treatments for weight management, anecdotal reports from patients and clinicians alike point to a reduction in what has been colloquia...
pmc.ncbi.nlm.nih.gov
November 22, 2024 at 7:32 AM
An interesting article on food noise! It will be especially interesting to see if the “food noise” dulls for my boy and helps keep him on a #pku diet.
pmc.ncbi.nlm.nih.gov/articles/PMC...
pmc.ncbi.nlm.nih.gov/articles/PMC...
Reposted by Sharon Bee
Take care of yourself people. You can’t pour from an empty cup.
November 21, 2024 at 10:42 PM
Take care of yourself people. You can’t pour from an empty cup.
November 21, 2024 at 6:47 PM
I love taking a daily walk into my village! But Wednesdays and Fridays are especially my favourite days due to the community charity shop being open! A euro a book ❤️ Yes, this is inland #Spain #myspanishlife
November 20, 2024 at 10:06 PM
I love taking a daily walk into my village! But Wednesdays and Fridays are especially my favourite days due to the community charity shop being open! A euro a book ❤️ Yes, this is inland #Spain #myspanishlife
My yellow roses in the November sunset! In the language of flowers, yellow roses symbolise friendship and joy! So here’s to joy and friendship that is being forged here on #bluesky
November 20, 2024 at 8:42 PM
My yellow roses in the November sunset! In the language of flowers, yellow roses symbolise friendship and joy! So here’s to joy and friendship that is being forged here on #bluesky
Reposted by Sharon Bee
What happens when a baby gets a positive heel prick test in the first week of life? How would you cope with your child's diagnosis? Navigating my #PKU journey. Please SHARE to help #RaiseAwareness of a challenging and commonly misunderstood rare condition.
youtu.be/KX9xvZgZ7Hc?...
youtu.be/KX9xvZgZ7Hc?...
The Empowering Role of Advocacy: A Parent's Perspective | Bernadette Sheehan Gilroy | TEDxTralee
YouTube video by TEDx Talks
youtu.be
November 20, 2024 at 6:22 PM
What happens when a baby gets a positive heel prick test in the first week of life? How would you cope with your child's diagnosis? Navigating my #PKU journey. Please SHARE to help #RaiseAwareness of a challenging and commonly misunderstood rare condition.
youtu.be/KX9xvZgZ7Hc?...
youtu.be/KX9xvZgZ7Hc?...
Reposted by Sharon Bee
E.S.PKU Conferences are the unique opportunity to interact with the professionals working in the field of #PKU During this year's Conference #ESPKU2024 participants had 2 opportunities to ask them their questions and get answers.
www.linkedin.com/posts/espku_...
www.linkedin.com/posts/espku_...
European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria on LinkedIn: #espku2024
The E.S.PKU Conference is a unique platform for fostering collaboration between professionals and the PKU community.
This year, attendees had two incredible…
www.linkedin.com
November 20, 2024 at 9:45 AM
E.S.PKU Conferences are the unique opportunity to interact with the professionals working in the field of #PKU During this year's Conference #ESPKU2024 participants had 2 opportunities to ask them their questions and get answers.
www.linkedin.com/posts/espku_...
www.linkedin.com/posts/espku_...
Reposted by Sharon Bee
And now a starter pack: go.bsky.app/J3KBu9E
November 20, 2024 at 11:08 AM
And now a starter pack: go.bsky.app/J3KBu9E
Reposted by Sharon Bee
This was definitely the case for both of us as parents at the initial clinic meeting after diagnosis. Months later I described this as feeling like the future, at least 20 years forward, had just set into stone.
November 18, 2024 at 8:20 PM
This was definitely the case for both of us as parents at the initial clinic meeting after diagnosis. Months later I described this as feeling like the future, at least 20 years forward, had just set into stone.
It's the middle of November and I’m walking in the hills still wearing a t-shirt, the sun is out, and the sky is blue. One of the many things I find joyful about my life in #Spain. #lovespain #costablanca
November 18, 2024 at 8:07 PM
It's the middle of November and I’m walking in the hills still wearing a t-shirt, the sun is out, and the sky is blue. One of the many things I find joyful about my life in #Spain. #lovespain #costablanca
Absolutely this 👇
I’ve felt the grief prior, during and after every #pku #ADHD #ASD appointment for my children. Then add the wider engagements with agencies such as NICE and the EMA! I only wanted to be a mum, but I’ve had to be much more!
I’ve felt the grief prior, during and after every #pku #ADHD #ASD appointment for my children. Then add the wider engagements with agencies such as NICE and the EMA! I only wanted to be a mum, but I’ve had to be much more!
Patient engagement is often described as the process of involving patients in healthcare research, decision-making & co-design. But there’s a deeper layer we rarely discuss: patient engagement is actually grief work
•Linxi Mytkolli💭
tinyurl.com/3srhxdwm
#PatientExperience #LivedExperience #Health
Why Patient Engagement is Actually Grief Work
Patient engagement is often described as the process of involving patients in healthcare research, decision-making, and co-design. But there’s a deeper layer we rarely discuss: patient engagement is a...
tinyurl.com
November 18, 2024 at 7:55 PM
Reposted by Sharon Bee
Proud mama moment. Wasn't good enough for display in primary school. Now front cover and 3 page spread article for NSPKU News and Views magazine. Go my girl! #pku #donate #nottoolate
October 1, 2024 at 7:50 PM
Proud mama moment. Wasn't good enough for display in primary school. Now front cover and 3 page spread article for NSPKU News and Views magazine. Go my girl! #pku #donate #nottoolate
If there aren’t any giants about to stand on the shoulders of! Then be the giant!
November 16, 2024 at 10:43 PM
If there aren’t any giants about to stand on the shoulders of! Then be the giant!
Reposted by Sharon Bee
Hello, my name is Clair and I have a metabolic genetic condition called #PKU.
#PKU means that I am missing an enzyme to break down the essential amino acid, phenylalanine. Phenylalanine is found in all natural protein, so this means I cannot eat ANY protein food. Meat, cheese, eggs, lentils etc.🧵
#PKU means that I am missing an enzyme to break down the essential amino acid, phenylalanine. Phenylalanine is found in all natural protein, so this means I cannot eat ANY protein food. Meat, cheese, eggs, lentils etc.🧵
November 16, 2024 at 9:01 AM
Reposted by Sharon Bee
*pssssst*
Hey
You know that one project?
That one you've wanted to write FOREVER except it's scary as hell & maybe you don't feel good
enough or brave enough or strong enough?
Spend 15 min on it today
Keep the dream alive
Even a pot on the back burner needs to occasionally be stirred
Hey
You know that one project?
That one you've wanted to write FOREVER except it's scary as hell & maybe you don't feel good
enough or brave enough or strong enough?
Spend 15 min on it today
Keep the dream alive
Even a pot on the back burner needs to occasionally be stirred
November 15, 2024 at 11:53 PM
*pssssst*
Hey
You know that one project?
That one you've wanted to write FOREVER except it's scary as hell & maybe you don't feel good
enough or brave enough or strong enough?
Spend 15 min on it today
Keep the dream alive
Even a pot on the back burner needs to occasionally be stirred
Hey
You know that one project?
That one you've wanted to write FOREVER except it's scary as hell & maybe you don't feel good
enough or brave enough or strong enough?
Spend 15 min on it today
Keep the dream alive
Even a pot on the back burner needs to occasionally be stirred
Reposted by Sharon Bee
Hey all, is there a list of British journalists and/or UK MPs to follow?
I have PKU, and there is a lot of campaigning that needs to be done in order to advance the treatment of PKU, so it would be really great if there was a list of MPs and journos on tap to reach out to.
I have PKU, and there is a lot of campaigning that needs to be done in order to advance the treatment of PKU, so it would be really great if there was a list of MPs and journos on tap to reach out to.
November 15, 2024 at 9:29 AM
Hey all, is there a list of British journalists and/or UK MPs to follow?
I have PKU, and there is a lot of campaigning that needs to be done in order to advance the treatment of PKU, so it would be really great if there was a list of MPs and journos on tap to reach out to.
I have PKU, and there is a lot of campaigning that needs to be done in order to advance the treatment of PKU, so it would be really great if there was a list of MPs and journos on tap to reach out to.