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poconnor · @poconnor
23 followers · 264 posts · Server pkutalk.com
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📬 September at PigPen 🐞 PKU, brain injury, mental health.

➡️Probiotic for PKU goes to trial

➡️Join in Second Hand September

➡️ plus a recipe for the courgette glut.

mailchi.mp/605aa49a359f/pigpen

or subscribe:mailchi.mp/be6eb020b0cf/signup

#livingwithpku #livingwithmildbraininjury #pku #concussion #tbi

Last updated 2 years ago
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poconnor · @poconnor
21 followers · 262 posts · Server pkutalk.com

What affects your PKU supplement choice?

#livingwithpku #pku #pcu

Last updated 2 years ago
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poconnor · @poconnor
21 followers · 262 posts · Server pkutalk.com
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I'm thinking about supplements, our special drink, medicine... What ever you call it!

I'm changing to a new type & wondering what affects your choice of supplement. Is it just the taste, or how easy it is to get, to take, to carry, etc.?

#pku #livingwithpku #lowprotein #raredisease #pkuproblems #phenylketonuria

Last updated 2 years ago
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poconnor · @poconnor
21 followers · 247 posts · Server pkutalk.com
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I did it! My first video content on

It is one of those psychological things that I’ve been getting over, particularly since I can never be bothered with make up! So here it is what is PKU?


#pku #livingwithpku #video #bekind #fckitfriday

Last updated 2 years ago
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poconnor · @poconnor
21 followers · 246 posts · Server pkutalk.com

Supplement, medicine, special drink... I'm thinking about supplements this month.

First up, looking at if we actually manage all of our supplement.

If you have PKU, do you take your supplement every day?

#pku #livingwithpku #adultpku #pcu #pkuproblems #pkucommunity #lowprotein

Last updated 2 years ago
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poconnor · @poconnor
21 followers · 244 posts · Server pkutalk.com
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Hurray, copies have been sold in my fundraising promo for the @NSPKU!

50% of profits from in June & July will go to this valuable patient charity.

Thanks to the new readers in the US, the UK, and Germany for helping a good cause!

#livingwithpku

Last updated 2 years ago
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poconnor · @poconnor
21 followers · 242 posts · Server pkutalk.com
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❓ ❓ Questions:❓ ❓
How common is ?
How is it inherited?
Why are some people allowed more than others?
Why does only work for some?

⬇️ ⬇️ Answers!⬇️ ⬇️
pigpen.page/the-genetics-of-pk

#pku #protein #sapropterin #livingwithpku #adultpku

Last updated 2 years ago
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poconnor · @poconnor
20 followers · 240 posts · Server pkutalk.com

TW: blood & needles

Tips for

The trial meant daily & I review different lancets & offer tips

TLDR: lancet has big effect on pain & healing as does choosing the site

pigpen.page/tips-for-blood-spo

#pku #bloodspot #sapropterin #tests #livingwithpku #lowprotein #adultpku #pcu #pkulife

Last updated 2 years ago
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poconnor · @poconnor
20 followers · 235 posts · Server pkutalk.com
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Sneak peek for PKU Talk folks:

A new video review of featuring our very own @jjunebrown

Thank you so much for this!

P.S if annotations has a good captioning to, please let me know!

#livingwithpku #pku #pkuawareness #pkulife #pcu

Last updated 2 years ago
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poconnor · @poconnor
17 followers · 221 posts · Server pkutalk.com
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New series on ()

I have spent months doing baseline testing and trialling Sapropterin. Like many others, it has proven a hard road, but I feel ready to share my experience in a series of 3 blogs.

Here is the first one for your weekend reading:

Sapropterin trial, part 1: genetics & patience.

to pigpen.page/

#sapropterin #kuvan #livingwithpku #pku

Last updated 2 years ago
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poconnor · @poconnor
17 followers · 216 posts · Server pkutalk.com
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Watch out folks - hitting a favourite.

Unknowingly paid the same for these in the online shop. Koko have reduced the tub from 500g to 400g with no price change.

also annoying as no longer 3phe per tub

#shrinkflation #pku #livingwithpku #pkuproblems #pkulife #pkuawareness #phenyketonuria

Last updated 2 years ago
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poconnor · @poconnor
17 followers · 215 posts · Server pkutalk.com

A year after the genetics testing I was able to start trialling ()

I had a poignant moment when I realised I was about to try my first treatment beyond restricted-diet therapy in over 40 years of

pigpen.page/sapropterin-trial-

#sapropterin #kuvan #livingwithpku #pku #adultpku

Last updated 2 years ago
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poconnor · @poconnor
16 followers · 209 posts · Server pkutalk.com

❓ ❓ Questions:❓ ❓
How common is ?
How is it inherited?
Why are some people allowed more than others?
Why does only work for some?

⬇️ ⬇️ Answers!⬇️ ⬇️
pigpen.page/the-genetics-of-pk

#pku #protein #sapropterin #livingwithpku #adultpku

Last updated 2 years ago
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poconnor · @poconnor
16 followers · 209 posts · Server pkutalk.com
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Easy Lunch ideas!
2g protein frm the new @Genius Ciabatta, filled with cucumber, pickle, & protein-free cheese (@Violife)

Ciabatta found @Ocado

#pku #livingwithpku #adultpku #lowprotein

Last updated 2 years ago
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poconnor · @poconnor
15 followers · 197 posts · Server pkutalk.com
Pig Pen - Sapropterin trial, part 2: Baseline testing for Kuvan PKU

Update on the ()Blog series:

Sapropterin trial, part 2: Baseline testing discusses the requirements of the baseline control testing before starting the medication, and looks at the interesting lessons learned.

pigpen.page/sapropterin-trial-

#sapropterin #kuvan #livingwithpku #pku #adultpku

Last updated 2 years ago
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poconnor · @poconnor
15 followers · 182 posts · Server pkutalk.com
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Monthly Newsletter out now: July at PigPen 🍒 , , mental health.
- Trials
- a visit to the House of Lords
- what does brain injury feel like, by @michelle_munt

mailchi.mp/8e00ac44b80f/pigpen

#pku #braininjury #sapropterin #livingwithpku #livingwithmildbraininjury #concussion #adultpku

Last updated 2 years ago
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poconnor · @poconnor
15 followers · 182 posts · Server pkutalk.com
Pig Pen - Sapropterin trial, part 2: Baseline testing for Kuvan PKU

Update on the ()Blog series:

Sapropterin trial, part 2: Baseline testing discusses the requirements of the baseline control testing before starting the medication, and looks at the interesting lessons learned.

pigpen.page/sapropterin-trial-

#sapropterin #kuvan #livingwithpku #pku #adultpku

Last updated 2 years ago
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poconnor · @poconnor
15 followers · 180 posts · Server pkutalk.com
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June 28th is , created to spread awareness of

I'm celebrating this year by donating 50% from sales of the book to the NSPKU, a valuable patient charity.

Why not learn more about and support a good cause!

pigpen.page/books

#internationalpkuday #pku #livingwithpku #pkuday2023 #pkuday

Last updated 2 years ago
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poconnor · @poconnor
14 followers · 179 posts · Server pkutalk.com
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Loganberries are a thornless cross between blackberries & raspberries.
Phe- free, tasty, and more productive than all my strawberry plants!

#livingwithpku #pku #pkulife #gardening #allotment

Last updated 2 years ago
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poconnor · @poconnor
14 followers · 174 posts · Server pkutalk.com
Pig Pen - Sapropterin blood genetics test for PKU Phenylketonuria

#sapropterin #livingwithpku #adultpku #pku #kuvan #pkuawareness #pkufitness #pkulife #pkuproblems #pkustrong

Last updated 2 years ago
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