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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
21 followers · 241 posts · Server pkutalk.com
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August at PigPen 🌞 PKU, brain injury, mental health.

- NSPKU Fundraising activities round up & conference details released

- Results of my trial

- Clear guidelines on returning to school after

- Have your say on .

- mailchi.mp/8138c4b53d97/pigpen

#sapropterin #concussion #ticketofficeclosures

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
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 · 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
Original post

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
Original post

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
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
Original post

poconnor · @poconnor
13 followers · 171 posts · Server pkutalk.com
Open media

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
Original post

poconnor · @poconnor
13 followers · 155 posts · Server pkutalk.com
Pig Pen - Genetics of PKU inheritance and sapropterin (Phenylketonuria)

❓ ❓ 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
Original post

Soheb · @soheb
42 followers · 1131 posts · Server pkutalk.com

Just noticed @poconnor has made a new blog - and it contains her utterly fantastic new graphic that explains how PKU is passed on from parents!

Give it a read here on her blog:

pigpen.page/the-genetics-of-pk

#pigpen #phenyketonuria #pku #phenylalnine #genetics #health #metabolic #metabolicdiet #metabolicdisease #dna #sapropterin

Last updated 2 years ago
Original post