In a previous post, I wrote about one type of PKU treatment called Kuvan. (Go check out the post if you haven't yet!) Another form of treatment for PKU is called Palynziq. It is a fairly recent treatment that has only become available to Americans in the last few years. I say Americans because it is not yet available in Canada!
This is another reason I started this blog: to raise awareness about the inaccessibility to medication so that the word gets out and something gets done about it!
What is Palynziq? Palynziq is the first FDA-approved Enzyme Substitution Therapy. Rather than a pill form like Kuvan, it is at-home daily injections. To find out more check out this website: https://www.palynziq.com/what-is-palynziq
For some reason, Palynziq seems to work way better and on a way broader audience than Kuvan. Although it does seem to work better, it does come with its share of side effects, most of which include allergic reactions. I've heard a lot of great success stories about palynziq but obviously I can't speak to it myself because I've never tried it. So I decided to interview Mark, who has had his own journey with Palynziq and PKU. Check it out below:
Name: Mark Slopey
Age: I am 48
Where do you live?: I live in Quakertown PA. That is an hour North of Philly.
What is your tolerance (How much protein are you able to have?): I have no idea of my phe tolerance.
Tell me more!: I was taken off diet at 5 years old. After suffering a major concussion at 42 I never totally healed and about 4 years after, I started getting major neurological issues. 2 to 3 anxiety attacks a day. Foggy head. Never knew what was going on. Had to leave my job. My wife comes home one day and says "I think your issues are more pku related and not so much concussion." I went to my doctors and started Kuvan. It brought down my levels to tolerable. Less anxiety attacks and not as bad. After a while I started Palynziq and after 8 months my levels dropped. That was about a year and half ago. My levels have been around 3 and they were never there before in my life. It was an amazing feeling. I eat whatever I want and on palynziq I can do that now without worries. I have not been on diet since I was 5. I was lucky. It took so long for me to have issues.
Occupation: So I am a Job Coach. I work with special needs kids and teach them job skills, working resumes and pepper customer service behaviors. I love my job!!!!
What do you like to do?: My hobbies are hiking, playing disc golf, watching my Philly teams and enjoying local breweries.
