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Spring Survey 2012

Closing Comments

Program: How Confident Can You Be with Your PKU Treatment Plan?
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Andrew Schorr:

As we wrap up, one of the things I've been realizing is you have some really committed healthcare providers around the country. You want to be connected with obviously a specialty metabolic clinic where they're knowledgeable about this and then have an active dialog, and you've heard that encouraged by Dr. Adams and Laurie Sprietsma, and so that's so important, so I want to thank Dr. Darius Adams for being with us from Albany Medical Center. Dr. Adams, all the best to you. Thank you for your dedication to families touched by PKU and I'm sure a whole host of metabolic conditions. Thank you sir.

Dr. Adams:

Thank you.

Andrew Schorr:

Also Laurie Sprietsma, thanks for being the cheerleader for Karen and for Patrick.

Ms. Sprietsma:

No problem.

Andrew Schorr:

And your dedication. You've been by her side there for seven years.

Karen Dent, I'm going to give you the last word, and that is you know there are families out there listening or will listen to the replay in the middle of the night when they just find out either their child is diagnosed with PKU or they're feeling kind of low grappling with all this wherever they are on their journey, or they're an adult who is coming back to all this. Any tips you would say to try to make it just a manageable part of your life or your child's life and have confidence that you're on the right track and can stay on the right track?

Karen:

Gosh, I could go so many directions with this. I would have to say, I mean obviously the child, yourself, whoever the patient is, it's so worth it just to have that full perfect life of functioning and to feel good every day. As a parent there's no greater joy than to see your child hit all those milestones and to know that you're really having a part in that with the diet and maintaining everything every day. It is a huge responsibility, but it's one that you don't get a second chance at, and it's a very serious responsibility, and there are people out there who can help you, and sometimes you do have to seek them out yourself, but it's so worth it to meet people who are like minded and who are going through the same walk that you're going through. Meeting people, just even sharing the best brand of a certain taco chip or something like that, that helps. Those small little things can mean so much. Just sharing and getting information, reading, talking, and keeping an open line of communication with your doctor and your dietician. I could go on for hours about this, but really just keeping your chin up and knowing that it's all worth it in the end.

Andrew Schorr:

Thank you so much Karen Dent. All the best to Patrick. All the best to Joe. Thank you for being with us too and sharing your perspective, and as I mentioned also Laurie Sprietsma from St. Louis Children's and Dr. Darius Adams from Albany Medical Center. This is what we do on Patient Power. Tell a friend. Tell anybody you know concerned about PKU. We have a vast library now, and it's all at www.patientpower.info/pku. We're going to be back on June 11th with another live program and then we're going to be discussing what are the problems when PKU is not treated effectively? Dr. Adams talked a little bit about it. We're going to talk a lot more about it with our experts then. We welcome your questions. Send them any time to PKU@patientpower.info. I'm honored to be with these committed folks helping you do better with PKU.

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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