It’s been a while since I last wrote a blog on our journey with PKU, and quite a lot has gone on in that time! Perhaps the most ‘interesting’, (if you can call it that?!) is that a few weeks ago, we thought I might have cervical cancer. We spent our Easter holidays on a knife edge, waiting for colposcopy and blood test results, which I’m very relieved to say, were negative for cancer. The letter was worded “hopefully we’ve removed all of the precancerous cells”, so I won’t know until October whether I’m totally off the hook or not.
In the meantime, I’ve done a lot of soul searching into how I, a generally a happy soul, with 20 years experience in naturopathic medicine, could suddenly find myself as close as close can be to cancer. Personally I believe that all illness is a manifestation of a psycho-emotional issue, and there’s now a whole new field of medicine dedicated to studying this. To put it another way, when we get sick, our body is ringing an alarm bell that something’s wrong and needs to be changed. In my experience, the thought pattern behind cancer is often deep rooted anger, sadness or frustration which has usually been supressed for a number of years. The cervix relates to childbearing and intimate relationships, so that’s where I started looking.
The reason was glaringly obvious to me. Since our son was born, time spent with my partner has given way to endless rounds of cooking and washing up. That’s made me deeply sad, especially around last Christmas which was when I started to notice that I wasn’t quite as well as usual. Although to the untrained eye he looks like any other little boy, our son, Jacob, needs more care than most 4 year olds. On numerous occasions since he was born I have mentioned to family that I was struggling to manage with the extra care he needs, on top of usual mummy/partner duties and running a busy herbal medicine practice. The reasons why are complicated but let’s just say I haven’t exactly been overwhelmed with sympathy or support. Something was always going to give at some point, and it did.
Only now have I come to realise that the main reason behind all this is that our son has PKU. PKU is a genetic condition which affects the ability to break down an amino acid in protein called Phenylalanine (Phe). If it’s not strictly controlled with diet and/or drugs, the levels soon become dangerously high, causing permanent brain damage. At the moment neither of the two drugs used to help manage PKU are available on the NHS, apparently due to the cost implications.
Life With PKU
To give you an idea of what life is like for families like ours, imagine that as of right now, one of your children, or someone else very dear to you has PKU. This means that on top of your existing work and family commitments, you need to find an extra 20 hours a week to care for them. You’ll need to prepare protein replacement for them several times a day (5 in our case), carry it with you everywhere you go, and make sure they have it on time. Once you’ve checked the labels and weighed it all out, you’ll also have to make sure they eat their food within an hour of protein replacement, and carry that everywhere you go too, along with spares in case you’re late home. But that’s not all. You have to make sure that schools, restaurants, hospitals, friend’s houses etc that they’ll be eating at know how to make their food and have everything they need. You need to make sure that your home is stocked up with protein replacement and low protein foods (which is surprisingly difficult at times!). Don’t forget the Dietician appointments, arguing with A&E Doctors until you’re blue in the face because they don’t understand why you’ve brought them in with a cold, and the clinical trials.
You won’t get a ‘thank you’. You won’t get paid. You won’t get any time off.
You might think it’s weird mentioning getting paid to care for your child, but it’s 20 hours a week that can’t be spent earning a living. For some families that can mean the difference between paying the mortgage or not.
So if I’d had cancer, and needed treatment which could have left me incapacitated for a time, who would have looked after Jacob? My partner would have to carry on working to pay for us to live, we have no family living nearby who could help, and nowhere for overnight guests to sleep. It’s a very precarious situation to be in, and any treatment which came with the usual side effects really wouldn’t have been a realistic option.
And it doesn’t get better with time. Like all children, Jacob’s appetite grows with him, which means more food, more cooking and more washing up. Boxes of food now pile up in our kitchen as there’s not enough room to store it. We don’t have room for a dishwasher or a fridge-freezer in our kitchen either. Our home is not fit for purpose, and the only viable option is to move a long way from here. That will mean leaving our friends and finding new jobs and schools. We wouldn’t have had to do that if it wasn’t for the PKU.
Why We Need Kuvan
So right now there’s another campaign to get Kuvan available on the NHS. Kuvan is a drug which will make a huge difference to some PKU families, allowing them to follow a more normal diet and taking away much of the stress I’ve talked about. The problem is, it costs three times what the diet costs, and NICE won’t approve it on cost grounds. BioMarin, who make Kuvan, are now under pressure to make their pricing fairer so that NICE approve it.
How You Can Help
I know there’s always someone worse off than us, but I’m sure you can appreciate that life with PKU is pretty tough, and why I think it could potentially have ruined my
health and my family. All of us living with PKU really need some extra love sent our way at the moment, so please keep an eye on the NSPKU Facebook page for any petitions and campaigns which need your input.
If you’d like to help right now, you could start with the attached letter for your local MP to sign and send to BioMarin https://www.yumpu.com/xx/document/read/62648494/biomarin