Jill Prawer
88 posts
Jill Prawer
@JillP358
Patient advocate, diagnosed with Lipoprotein Lipase Deficiency aged 2 now also known as Familial Chylomicronaemia Syndrome (FCS). All views my own
London Katılım Ağustos 2016
144 Takip Edilen51 Takipçiler
Supper of gnocchi, passata, courgette, onion, garlic, shitake mushroom, herbs and a bit of low-fat ham. Yum! >1.5g fat. Had another coffee, 2 apples and a satsuma, a crumpet and marmelade (2.1g fat). Day total >8g fat #FCS10gFatChallenge #FCSAware2023 @ActionFCS @fhpatienteurope
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Lunch today, fillets of cod and smoked haddock microwaved with grated ginger, spring onion and soy sauce, on rice with mange tout. >1.5g fat Now for a snack bar with 0.8g fat. Toatl 2.3g Daily total about 4g fat so far #FCS10gFatChallenge #FCSAware2023 @fhpatienteurope
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A visual reorientation if the #FCS life!
Daccord Magdalena@magdadaccord
Snacking on #FCSAwarenessDay in #Switzerland means not even a bite of #Gruyere #cheese, no #avocado. But surely a nice #Apple! #FCS10gFatChallenge in solidarity with people living with #FCS! A #raredisease and a rare #lipid condition.
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My #FCS breakfast. Toast with mashed banana, cottage cheese, and pepper. Skimmed milk latte. All products chosen for lowest fat content available. Total 1.2g Fat @actionfcs @fhpatienteurope #FCS10gFatChallenge #FCSAware2023 for more informationwww.actionfcs.org fhef.org/news
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1 week until FCS Awareness Day focusing on Familial Chylomicronaemia Syndrome. Help us to raise awareness. Take the #FCS10gFatChallenge and recruit other to join in. For more information actionfcs.org & fhef.org/news/ @ActionFCS @fhpatienteurope #FCSAware2023
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Jill Prawer retweetledi
She kept the rest of them out too #cleansheet
Seton Hall Women's Soccer@SHUWSOC
We're knotted up at 0-0 through the first 45 #HALLin 🔵⚪️
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Jill Prawer retweetledi
We nearly get three points but we'll settle for one here at Owen T. What a game.
Pirates collect points against the Hoyas for the first time since 2011.
#HALLin 🔵⚪️
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Jill Prawer retweetledi
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Jill Prawer retweetledi
Jill Prawer retweetledi
Please join us in welcoming our new Community Engagement Manager and Ambassador Programme Manager!
After our recent appointment of Jill Prawer as Rare Disease Project Manager, we are thrilled to be joined Elsie ‘Cindy ‘ Evans and Emma Print.
fheurope.org/latest-news/ou…
#team
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Jill Prawer retweetledi
#FCS in #children #webinar!
Don’t miss this rarely covered topic during a dedicated online event hosted by @ActionFCS. Wednesday, April 26th 2023 8pm-9pm CET. To register, please email info@actionfcs.org
#inheritedlipids #raredisease #FindFCS
#FHEurope #Network
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Jill Prawer retweetledi
Jill Prawer retweetledi
Getting the right #diagnosis is an #odyssey for people with #rarediseases.
#DYK it takes 5-7 years, during which patients might have unnecessary tests, procedures, receive a wrong diagnosis, experience delays in getting effective care, leading to irreversible damage.
#HoFH #FCS
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Have a look at the amount of fat you're eating in a day!
Action FCS@ActionFCS
For those affected by FCS the #fcs10gfatchallenge is a relentless reality. Eating out a nightmare, and the looming threat of pain/pancreatitis a constant companion. actionfcs.org/news/fcs-aware… @heartukcharity @GeneticAll_UK @GutsCharityUK @manchester_cv @livingwithfcs @findacure
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