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During @BorisJohnson's election campaign back in Christmas last year, he listened to two parents talking about the struggles of #Phenylketonuria or shorthand called #PKU. He listened to them talking about how their daughter takes 128 tablets (you read that right).
He heard them talk about how restrictive the diet was. He saw the parents excitement at the thought of their child and the PKU community living better lives. He heard about how other many other countries have access to this exact drug that the UK can't seem to get.
He said he would get @MattHancock to look into getting this drug on the @NHSuk.
Today @PKUFamily and @Carolin93205471 have found out that the NHS have taken extra steps to make it *harder* to get Kuvan on the NHS. You can read the thread here: https://twitter.com/PKUFamily/status/1278261773192368133
Today @PKUFamily and @Carolin93205471 have found out that the NHS have taken extra steps to make it *harder* to get Kuvan on the NHS. You can read the thread here: https://twitter.com/PKUFamily/status/1278261773192368133
#PKU is a hard diet to manage. 90% of food sold in supermarkets and in stores will poison your brain. You have to go out of your way to carefully consume certain amount of protein for breakfast, lunch, and dinner.
What's happening is that there is an amino acid in protein called #Phenylketonuria. With people who have PKU, the part of our bodies that breaks it down is basically faulty and doesn't do a good job of it. What that means is #Phenylketonuria builds up in the body.
#Phenylketonuria building up in the body means that it enters the bloodstream and enters the brain. There is a reason why our bodies break this stuff down - raw amino acids are poison to the brain. This means all sorts of issues, as seen here:
You might think "well just don't eat the protein lol" except it's bloody everywhere. Literally, everywhere except fruits and vegetables. And going completely cold turkey from #Phenylketonuria means our bodies start breaking itself down and making more of it! It's everywhere.
I'm on 6g of protein per day. Have you tried 6g of protein? For some #PKU people, that's actually generous. Want to know how much 6g of protein is? @McDonalds largest french fries in the UK is just over 6g of protein. That's a *daily limit* for people like myself.
Continuously exceeding protein doesn't just kill your brain - it's a slow burner. It takes a lot longer to understand and process stuff. Your mood starts to swing more rapidly. It can even manifest itself into intense anxiety and depression (it's happened to me). You aren't you.
So how well does #Kuvan work? For a lot of people, it is enough to go from 5g to 15g of protein (that's enough for a @wagamama_uk's dish). Some have even reached 50g, and are eating meat - a very high source of protein - without any consequences.
#Kuvan is available in many other countries (virtually every EU country except the UK and perhaps another country). The UK doesn't seem to have it despite doing trials which found out it *drastically* improved the ability for #PKU people to eat protein
@borisjohnson *promised* there would be some action on this drug through @MattHancock and that we would see it on the @NHSuk . It's bad enough that it isn't on the NHS, but now I'm hearing that efforts to bring #Kuvan to the @NHSuk are being sabotaged?
A lot of this #PKU diet is essentially remaking existing food but in lower protein form. It's basically it's own job, and myself and others struggle to do it on our own. A lot of independence could actually be gained from getting #Kuvan on the @NHSuk.
There are people out there get in a flap over being a #vegan. They say quitting meat is too hard, they miss the taste, etc. And then there are people like us who have to struggle with fruits, veg, and remaking everything from scratch so we don't poison our brains.
It's not like the @NHSuk aren't capable of giving good news - I heard some absolutely excellent news from the #cysticfibrosis community and I genuinely cannot be happier for them. I see how the @NHSuk does good every day. I just wish it would be more accessible with #Kuvan.
The UK has been waiting for #Kuvan for a long time. This year it will be 12 years since we've waited to get #Kuvan through the @NHSuk and have a chance of living a normal life. One that's free from constraints and 128 pills to supplement the lost protein.
If I had #Kuvan, I could actually spend more time with my friends at restaurants. I would stop panicking over anything that gets eaten when I go outside. I wouldn't have to feel so compelled to plan my days out including places to buy low protein food and water to down supplement
I'm sorry that this is so long, but I am just so incredibly tired of waiting. Tired of getting excited for nothing. Tired of trying to maintain my protein levels with the restrictive #PKU diet and going nowhere.
