Over the last year I have had meetings with companies that create items for PKU. I have been to the ESPKU conference in Berlin, Germany and there I have met the heads of companies and the scientists of PKU who are fighting every day to get a better quality of life for PKU patients everywhere.
Whether it's making better, 'normal' looking low protein food, developing new innovative tastes for drinks or doing groundbreaking research into the possible idea of gene treatments for PKU.
What I'm always left feeling when I meet these people, is that out there, someone is fighting my corner, that I am not alone in my struggles and that quality of life for PKU's will get better.
However after visiting my metabolic doctor earlier today, I have never felt more alone, in struggle to cope with my diet.
As an adult PKU I find that now my life is stablising, having a job gives me better routine and having a protein substitute drink that I enjoy means that I can cope better with the psychological side of the diet.
However there is one area that I am still struggling with, which is the food. Not cheating on my diet is the biggest struggle I am facing currently. When you go into a McDonald's with your mates and all you can have on the menu is chips, you can't help but want something more, something better, even though that's so much worse for you in the end. It is a real struggle.
The most frustrating thing is I know the solution to this problem.
It's a very simple solution and I know it works for me without a doubt.
The solution is blood monitoring of my phenylalanine levels.
The thing you have to understand with PKU is that the consequence of eating a high protein item is devastating but not instant.
We do not throw up, our throats do not close up, we do not come up in a rash and we do not die. We slowly but surely get brain damage.
Here lies the problem, when you are sitting in a restaurant with friends or family and the only thing you can eat is the sides, what seriously is the motivation for us with PKU to not have a pizza, or a burger, or pasta? That one day in the future, our cognitive functions might slow down?
In that moment when you want to just sit down and have a nice meal with your friends.
You honestly don't care.
For me the only way I know that eating a high protein item has had a serious impact on me at all is through blood monitoring.
And for me, the blood monitoring is the only thing stopping me cheating, as numbers never lie. However, I also know if I have something high in protein it usually takes a week to get that out of my bloodstream. So that means if I want to cheat on my diet but stay under the radar with my doctor, it's as easy as only eating properly for only one week every month. This of course is not what I am supposed to be doing at all. The problem is, it's much easier than sticking to my very restrictive diet.
However, there is a very easy way to change this way of thinking, if the blood test is more regular then there is no time to work the results in my favour.
So I suggested this simple idea with my doctor today.
I have blood tests twice a month for six months to get into the routine of not cheating on my diet.
And as I have said previously, I know this will work for me because I have done it before.
Ideally a PKU blood phenylalanine level should be between 300umol/L- 700umol/L (600umol/L with the new EU guidelines).
My level on average is usually around 620umol/L - 680umol/L. Not ideal at all.
When I started doing two blood tests a month to get myself back on my diet at the age of 19, my level went straight down to - 400. The lowest it's been since I was 11.
So I know this will work.
I ask my doctor about doing two blood tests a month for six months and I said it really helps me and acts as a deterrent to stop me cheating on the diet.
He explained that currently his managers are trying to cut budgets to lower cost and the biggest cost of the PKU section is the blood monitoring, so they are trying to cut this cost down.
Let me repeat the point I made earlier,
For me, the only way that I know, that eating a high protein item has had a serious impact on me is through blood monitoring.
To be told by your doctor, that the one thing that can monitor your metabolic condition, is being cut down due to budget constraints, is incredibly frustrating.
He told me that I can do two every month for 3 months but that we can't really do it for any longer because someone else suffering from PKU could also come in and ask for 3 blood tests a month, so where do we draw the line?
The other major thing about PKU is that every person's condition is different. I have met a lot of PKUs in my 22 years and I never met someone who has exactly the same PKU as me. We all have different tolerances and we all have different needs.
Again, to be told by your doctor that we have to draw the line on what support individual patients can and can't have with their condition is maddening.
So, what is the answer, to the solution of our problem?
Home Blood Monitoring.
Diabetics with type 1 diabetes are recommended that they test their blood 4 times a day.*
The impact that a home monitoring kit would have on PKU life is massive. We would finally have a clear picture of how PKU actually affects us in every day life.
This means for the fist time we can better control and understand our diet and tolerances. We could see the actual impact of eating something high in protein, if our emotions are all over the place we could see how much influence our blood levels have on that but more importantly than anything else, we would have control. For the first time in our life we don't have to just depend on the one monthly test or the six monthly appointment to get feedback on our diet.
Another important impact of the home monitoring kit will be the positive reinforcement of the benefits of staying on diet. If you have stayed on the diet you can physically see improvement every week, which gives you more hope and confidence that you can continue to stay on your diet and that staying on your diet does make a real difference.
Personally, a home monitoring kit for my blood levels would mean the difference between guessing and knowing.
Knowing that I am healthy.
Knowing that I am in control.
Knowing that every time I choose to stick to diet, it does make a difference.
I am now speaking to all the researchers, scientists and doctors that are currently looking to create a home monitoring kit for PKU phenylalanine levels.
Please know, that this will change a lot of lives for the better. And those with PKU, please keep fighting for this to become a reality.
*http://www.diabetes.co.uk/diabetes_care/how-often-should-i-blood-test.html
