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Kaitlyn’s Story

Program: Young Adults with PKU: Transitioning to Life on Your Own
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Andrew Schorr:

Let’s get started.  First, I want you to meet Kaitlyn Kormanik, and Kaitlyn is with us from Pittsburgh.  She’s 23 years old.  She is a Ph.D. candidate in genetics and genetic research, and imagine if anybody ever said, well, somebody with PKU, can they really do the heavy-duty, intellectual, mind-processing things, yes, they can, and she is certainly an example.  Kaitlyn joins us from Pittsburgh.  Kaitlyn, thank you for being with us today on this special edition of Patient Power.  How is life going, even though you even take formula with you on the job every day?  Are you living to live well on your own? 

Kaitlyn:

Yeah, I’m doing really well.  I just started working in the lab at Children’s Hospital and it’s going great so far.  I’m working with Dr. Vockley in genetics, which is kind of ironic.

Andrew Schorr:

It is, and while you’re not--in your particular research you’re not researching PKU you’re researching another condition, we should mention if you read on the web page Kaitlyn’s bio, Dr. Vockley is at University of Pittsburgh Medical Center.  He’s the really head guy related to metabolic disorders, and so in effect he’s the physician who leads the care for now this young woman who is working in his lab.  Pretty cool. 

Tell us now, as a young adult you’re in a graduate program but you went through college earlier.  How did you be successful in having a low-protein diet, formula, etc., so that you could really do all the things you needed to do?  I believe you were on a softball team as well and heavy-duty educational requirements.  How did you manage that? 

Kaitlyn:

I think the key was just simply staying on a diet and really sticking to the low-protein foods, and formula was really, really essential because without it you wouldn’t have the energy to do the things that I was doing.  So I think that was really a big part of it.  And also the friends that I had around me and my family also were very supportive, you know, kept telling me, you know, this is what you have, you need to deal with it and accept it.  And in order to be successful and have a healthy lifestyle you just need to buckle down and drink the formula and eat these low-protein foods.

Andrew Schorr:

Now, let’s talk about Phe levels a little bit.  Could you tell if you skipped either the low protein diet or the formula which helped you?  Could you tell that it was more difficult? 

Kaitlyn:

I would say it’s like getting just the formula end, there would be a change in mood.  Like I would get a little irritated easier, I guess, and I wouldn’t have as much energy.  I noticed that especially with the formula.  I wasn’t so much not sticking to the low-protein foods.  It would be the formula, if anything.

Andrew Schorr:

Kaitlyn, now, how did your parents prepare you for the day you were going leave home and you were going to have to, if you will, own your PKU? 

Kaitlyn:

They were really caring and supportive.  All through middle school and high school they really prepared me in the fact that they encouraged me to take charge.  At one point when I was in high school my mom said, she’s like, no, I’m not making this formula anymore.  You’re going to start doing it for yourself and I think that was really a nice kick in the butt, you know, to say, hey, you’ve got to do this now.  You’re going to be going on to better things, going far away, and I think that was the big issue that helped.

Andrew Schorr:

And then high school was sort of like the proving grounds for that, right, because you were managing your PKU more then.

Kaitlyn:

Yes.

Andrew Schorr:

All right.  Now, did you ever have to tell your parents to back off, because, let’s face it, for any parent listening, they love their kid and they know how important the diet is and the other steps, maybe taking Kuvan if they take a medication, how important that is.  I know my own child has a special diet, and so I’m saying did you take this, and even this morning, she said, Dad, don’t ask me.  Did you ever have to push back a little? 

Kaitlyn:

You got tired of hearing it for sure, but as far as parents go just keep on them.  Like I know they were on me for a reason now and I know it helped and it was good.  It was a very good thing, so I’m really, really glad they didn’t let it drop and they just kept forcing the issue.

Andrew Schorr:

All right.  Now, let’s meet a partner that you’ve had for over a decade now in Pittsburgh, and that is Nicole Payne.  Nicole for more than a decade now has been a metabolic dietician at the University of Pittsburgh Medical Center and the Children’s Hospital there, and she has been your dietician and she’s with us today.  So first of all, Nicole, it must make you feel great that Kaitlyn is doing so well. 

Ms. Payne:

Oh, it sure has.  To see a 13-or 14-year old blossom into a 23-year-old independent, motivated young lady, that’s something that’s very rewarding.

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