Health Topics

Closing Comments

Andrew Schorr:

Yes. We’re all in it together. I want to mention, we have a few minutes left. So Dr. Vockley we’ve had you sitting there quietly there for a couple of minutes. You know Lauren just mentioned an interesting comment. I’d love to hear your point of view because you’re the chief; you’ve been at this a long time. You as a healthcare provider, you learn from the families who come see you and the patients, right? Tell me a little bit about that because it’s really a two-way street isn’t it?

Dr. Vockley:

Oh my goodness. I think I learn more from them than I teach them. If you ever stop learning in this business then it’s time to get out of it, and you just need to be constantly aware of where your patients are because that old, and now I am showing my age, the old “Doctor Welby Show” where good old Doc Welby knew what was best and just told his patients what to do; you know that just doesn’t exist. There isn’t a right answer for everyone, and so if you don’t take the time to learn about your patients and learn from them you are never going to know what the right answer is. You just can’t come to it by yourself.

Andrew Schorr:

Well said, and I would mention that we’re on a journey. As was said at the beginning, I’m a leukemia survivor. I don’t know what lies ahead. So I’m on a journey with the providers that I check in with all the time. For people affected by PKU it starts at birth and goes a long time, and as we heard with Tim, Tim was as a little kid and a teenager very involved with seeing providers, and now again by his own decision, and that’s a journey that will change.

Shideh you see changes in people, and we’ve talked previously about teenagers who kind of are resentful. Certainly my daughter and I knock heads sometimes on just her journey with possibly celiac disease. So that’s okay, right? It’s going to wax and wane, and personalities are going to change.

Ms. Mofidi:

Absolutely.

Andrew Schorr:

And as Dr. Vockley was talking about with the nine-year-old the clinical situation may change too, right?

Ms. Mofidi:

Absolutely, and I think echoing what all the other speakers have said it’s the support that’s available, the social support, the maintaining a positive attitude, and as Lauren just stressed a few seconds ago, the manageability of what we’re asking the patients to do. If they’re not there, if they are not at 100 percent and they are starting at zero, let’s get them to five percent one step at a time and slowly advance and make positive change rather than making it so impossible for them to do that they will be defeated by the process.

So it needs to be, as Dr. Vockley also said, you listen to the patient, see where they are at, and just do one step at a time to make the positive change, and you know most of the time when patients are educated and kind of figure out what’s happening slowly, slowly they’ll make the changes for you and make the behavior change that’s necessary. You can never do a lot at one time, but you can do very incremental changes especially when food is involved. It’s just so difficult to change behavior with food because you can’t go without it, and it’s such a difficult item. It’s just everywhere and just so many versions of it. It’s so accessible, and it’s so difficult to make change if it’s not a conscious decision as Tim said.

Andrew Schorr:

Well we call what we do, as I said at the outset, Patient Power, and Dr. Vockley and all of you were talking about how now there is so much more information, there is more going on, and we’re not in the Marcus Welby age anymore. So, and I didn’t mean to say by the way Dr. Vockley or Lauren that folks in Pittsburgh or Chicago are laid back like we are in Seattle, and that it’s only in New York where Shideh is. I think we all actually even out here can be energized, if you will, and play a very active role in the healthcare that’s involved in the community that’s involved with ourselves or a loved one, and so we’re really in that age. Thank goodness, you know I’m not a technical person, but I’ve been so excited to make use of the Internet, and so many people in PKU are now to bring together people with a very uncommon condition. You are not alone. Tim you know that now, right? You are not alone.

Tim:

Most definitely.

Andrew Schorr:

Okay. All right. Well we’re going to connect you with some really neat folks. We’re going to have to have you go out to dinner with Gregg Schlosberg who you’d really like in Chicago. You will not eat a steak dinner. You will not see it on the menu. Your eyes will skip over that, and you both as adults will be doing great.

Lauren I want wish you all the best with the outreach you’re doing for adults in the Chicago area. Dr. Vockley I’m sure you’re doing that too and Shideh in New York as well. That’s a big priority now is helping really the whole of people who are affected by PKU at any age really know they are not alone and know that there are options for them.

Dr. Vockley I want to wish you all the best in Pittsburgh. Thank you so much for being with us from UPMC and good luck with all that research that’s going on. I know we’ll encourage everyone to check with their metabolic center to see if there are clinical trial options even if it’s for a different flavor of bar to see if it’s helpful. Dr. Vockley thanks for being with us.

Dr. Vockley:

My pleasure.

Andrew Schorr:

All right, and Lauren all the best with your educational outreach.

Ms. Leviton:

Thank you very much.

Andrew Schorr:

Yes. Thank you. Shideh all the best. I’m going to come visit you when I’m back to see my relatives, okay?

Ms. Mofidi:

Sounds good.

Andrew Schorr:

And I’ve got to meet Liam, and all of you can meet Liam Bobker, Shideh’s patient on the Internet. Again he is one of those videos of powerful PKU patients. So Tim, I’m going to give the last word to you. So you took it upon yourself, now a second time in life, to really pay attention to your PKU. For someone out there who hasn’t made that decision or who maybe even is younger, or back when you were a teenager you know how hard it is. Is there anything you would like to say to maybe inspire them?

Tim:

You know there are two things that I think are really important. If you’re going to be an advocate for yourself or someone that you know that has PKU, which is sort of the theme we’re going with tonight, and the first one I think is education. Educate yourself. Know what’s out there because for the period of time that I was away from sort of PKU treatment there were a lot of developments as far as dietary supplements, the pasta that was mentioned earlier and all these different things which I didn’t know about for long time. So when I contacted my center again to learn what was going on I learned about all these new treatment options. I also learned some things about the consequences or the symptoms that adults who are off diet might have. When I was younger that research wasn’t out there. We didn’t know a lot about that, and I learned later on and saw some of those symptoms in myself. So I think education is the first step.

And then the second part is honesty. Now I know I’ve said some things sometimes when I’ve been meeting with my doctors that probably made them go into a small room after my appointment was over and wonder what I was thinking, but as far as my treatment is concerned if I’m having difficulty taking my 26 pills, or if I’m having difficulty making choices about the food that I’m eating, your doctors are there to work with you. They are there to be your partners, and they are there to help you make those good decisions, but they can’t do it if they don’t know the difficulties that you are having. So regardless of how unappealing the information may be you have to share with them what’s going on. You can’t get the best course of treatment if you’re not being honest with yourself and with your doctors about where the difficulties lie.

Andrew Schorr:

Wow. So well said. Thank you for your passion for this. Tim Kelly in Joliet, Illinois. Hey, good luck with the new school system and teaching those special ed classes. I know you’ll be great Tim.

Tim:

Thank you very much.

Andrew Schorr:

And thank you to your in-laws for having the little boys who might not have been so quiet if they were in the room with you giving you a break tonight. So thanks to them wherever they’re listening. We really appreciate it and wish you all the best.

Tim:

Thank you.

Andrew Schorr:

Okay. Well this is what we do on Powerful Patient. This is what we’ve been doing now in our second year. Thanks for the support from BioMarin and really from the whole community, but this is the end of a live program. We hope to do others, but there’s this vast library as we’ve said several times now at www.patientpower.info/PKU, a one stop shop, and also thanks to our friends at the National PKU Alliance, and if you have suggestions for future programs we may do or other ways that we can help you, send them on. Just send them to PKU@patientpower.info, and maybe sort of rate how we did. So let me know because we’ll pass that on to these people who can hopefully fund more programs. So if you think we did well tell us. If we sometimes have things we need to work on tell me that too. I can handle it.

Okay. Continue to have a great summer as the kids are going to school or teaching school, then have a great fall, and remember where all those programs are, and take a look at some of those videos. Liam is a star. Liam if you’re listening you are one of my favorite kids in the world.

I’m Andrew Schorr in Seattle. Remember knowledge can be the best medicine of all. Have a 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.