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iem-family · The Inborn Errors of Metabolism Family Support List(IEM) is for discussions and support of the families with kids or adults hav
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Re: [iem-family] 21 y/o with PKU   Topic List   < Prev Topic  |  Next Topic >
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#99 From: MacPku@...
Date: Sat Jul 1, 2000 3:16 pm
Subject: Re: 21 y/o with PKU
MacPku@...
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Dr. Freidrich:

Thank you so much for making me aware of your adult PKU clinic. My son,
Daniel, has been attending St. Christopher's Hospital for Children's PKU
clinic since he was 13 days old. No one there ever mentioned the existence
of a clinic in the state for adult PKU patients.
Could you give me anymore information about your clinic so that I may pass it
onto our other families in Pennsylvania who have adult members with PKU?
Thank you very much.

Lin
Mom to Daniel, 21 y/o
Classical PKU
Philadelphia, PA



#100 From: susan.l.rump@...
Date: Sat Jul 1, 2000 7:54 pm
Subject: Re: 21 y/o with PKU
susan.l.rump@...
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---Dr. Chris Friedrich wrote:
Hello - are you aware we have a clinic for adults with PKU in the
Medicine Department at the Hospital of the University of Pennsylvania?
--- end of quote ---

Dear Dr F/Chris,
And you have a Department of Metabolism, too--yes? Is Dr. Marc Yudkoff still
there? The gamut of iem's is dealt with there, right?
Just for my/all of our information...
Thanks
Susan



#101 From: Christopher Friedrich MD PhD <cfriedri@...>
Date: Sun Jul 2, 2000 1:52 am
Subject: Re: 21 y/o with PKU
cfriedri@...
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You're thinking of Children's Hospital next door.  We treat adults who
"outgrow" CHOP's Metabolism Department at the Hospital of the University
of Pennsylvania in our Division of Medical Genetics, which has a
Metabolism Clinic.

I think Mark Yudkoff is still at CHOP or Seashore House, which CHOP bought.

Chris Friedrich


> > ---Dr. Chris Friedrich wrote:
> Hello - are you aware we have a clinic for adults with PKU in the
> Medicine Department at the Hospital of the University of Pennsylvania?
> --- end of quote ---
>
> Dear Dr F/Chris,
> And you have a Department of Metabolism, too--yes? Is Dr. Marc Yudkoff still
there? The gamut of iem's is dealt with there, right?
> Just for my/all of our information...
> Thanks
> Susan
>
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#102 From: susan.l.rump@...
Date: Sun Jul 2, 2000 6:01 am
Subject: Re: 21 y/o with PKU
susan.l.rump@...
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Thank you, Dr. Friedrich. I'm curious because of a directory that Dr. Harvey Levy of Mass. General/Boston Children's gave me a few years back to help parents of kids with ultra-rare B12 iems who contact me to find expert care in their area.
Good to know you have a well-developed system for older-person follow-up. Even with thorough pediatric care, decent adult follow-up is hard to find in many places. I appreciate your answering my question.
Have a good summer.
Susan

 
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