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Spring Survey Results 2012

Closing Comments

Program: How Does PKU Affect You and Your Relationships? A Look at Managing PKU from Many Perspectives.
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Andrew Schorr:

I've got to live in your house. You guys, everything goes well there. It sounds great. Okay, so Michelle before we head to the end, you're 21-years down the road here, and you've had a great mom and dad I'm sure have supported you and your siblings, and teachers who were in the know, and I know you've been a gymnast, and you've had coaches who've supported you, and you have a really healthy life, but it's not so easy for some people. What advice would you give them that they can get to a healthier place and feel good about it and just live with PKU as just part of their life but not this anchor, if you will?

Michelle:

My advice to them is to have them try as hard as they can just to stay on diet, and count your Phe every day, and just kind of try to make it a schedule because the more you do it every day if it becomes like a ritual it will be just like second nature. You'll do it without even thinking about it, and it won't even be a problem. It will be just the thing that you do right in the morning and you drink your medicine or you just do it and just get it done with. The more you do it I think the easier it is to not really think that it's such a burden.

Andrew Schorr:

Mary you must be so proud of your patient that she is training to be a nutritionist. She's going to bring a lot to the party won't she?

Ms. Niewinski:

Oh she absolutely will. She will.

Andrew Schorr:

Now Mary what would you say? We've got parents listening. We've got kids listening. We've got older kids listening. We've got adults, and now of course Michelle is surely an adult. It sounds like communication plays a key role among people with your advisors such as yourself as a nutritionist. It's really about communicating for long-term health isn't it?

Ms. Niewinski:

It is, and it's helping the patients buy in to better health. You've talked about better health, and helping them recognize that better health goes hand in hand with better Phe levels and better metabolic control in their PKU, and helping them recognize that better health is within their control. It's all up to them. They control it. They make the decisions, and depending upon what age they are they need mom and dad for support, and then as they get older and they move on to adulthood it's all about them. They make the decisions.

Andrew Schorr:

All right. Well we're blessed with some wonderful PKU metabolic clinics. We have you, and there are others in Boston as well, Children's Boston. I was at the Children's hospital where Laurie Bernstein is in Colorado there. We've had so many guests folks across our special edition series, and I think you know how many committed groups there are. We were talking, Mary and Michelle were talking, and Eva was, about the group in Illinois, which is just neat, the support that you offer.

So Dr. Gentile you talked about support. So not keeping it a secret and turning to your PKU family, and then maybe your friends who never heard of PKU and enlisting their support, there's a lot of power in that isn't there?

Dr. Gentile:

Yes. It can be helpful. It depends. Some kids are super private, and that's fine to keep it private as long as it doesn't interfere with their staying on diet, and some people find it really important to share that information. So I think it's really on an individual basis.

In adolescents what we've found has been important for peers to have other people who have dietary restrictions, specifically PKU can be helpful, but across the lifespan it's really their prerogative. It's really your healthcare information. It's up to you who you want to share this information with.

Andrew Schorr:

Now you mentioned that acronym. Say it again, and is there someplace where people could read up on it, that whole strategy for support and manageability? Where does someone find that if they're searching?

Dr. Gentile:

That's a great question. It's a health belief theory. Now I have the article, and I'm happy to share the article with you, but that is …

Andrew Schorr:

All right. We'll link to it on our website. Okay.

Dr. Gentile:

Okay great. It's by Dr. Waisbren.

Andrew Schorr:

Okay so that's what we'll do. Oh we love her. Of course she's been on earlier programs. I love Susan.

Well we've sort of made www.patientpower.info action central. I'll mention folks also you know there's a lot of information, and so we've been putting together some what we call 'take action guides' to help you say, 'Okay. What do I do with this information? What are some specific things I can do?' So look for that peppered around our series on Patient Power. Remember the website you can go to directly for the whole series is www.patientpower.info/PKU.

I want to thank you all for being with us, Dr. Jennifer Gentile who is with us from Children's Hospital Boston. Thank you for all you do Dr. Gentile. I really appreciate it.

Dr. Gentile:

No problem.

Andrew Schorr:

Thank you, and also Mary Niewinski who is a genetic metabolic dietician. Thank you so much for being with us Mary and also for helping us connect with Michelle. We really appreciate it.

Ms. Niewinski:

Your welcome. Thank you Andrew.

Andrew Schorr:

Okay, and I'll come back to you for some celiac inspiration too, and then also Michelle Brandon. So you've got college coming up for a little bit more. I know you're going to wind up at some PKU clinic somewhere and probably with some really handsome guy, if not my son. All the best, and I wish you happy relationships, and mom doesn't have to worry, and I know she doesn't. She's really proud of you. Thank you so much for being with us too Michelle.

Michelle:

My pleasure.

Andrew Schorr:

All right. Well this is what we do on Patient Power, and I am so delighted. I've just been learning so much since last year on PKU, and hopefully I've been a good host for you as this brings information to you and the PKU community.

Now remember we've got a lot of stuff on the website, www.patientpower.info, some really neat videos now, Breanna and Liam. Please take a look at those. The Powerful Patient pages we've been putting up. Look at all that, the videos; also the new interview with Laurie Bernstein on some neat recipes, and remember August 13th we're going to discuss how can you be a powerful PKU patient and advocate for yourself or a loved one.

Thanks so much for being with us tonight. I'm Andrew Schorr. Remember knowledge can be the best medicine of all. Good night.

Please remember the opinions expressed on Patient Power are not necessarily the views of BioMarin, our partners, or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you'll get care that's most appropriate for you.

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