How Kuvan Affects My PKU

How Kuvan Affects My PKU

Avatar of Rebecca

How Kuvan Affects My PKU

September 12, 2009 in Uncategorized

On Monday, September 14, 2009 I am going to get a blood-draw for a baseline PHE level, then will begin taking Kuvan. I plan on recording my thoughts and the affects Kuvan has on my PKU and me. I am a 47 year old woman with PKU, diagnosed in 1966-when I was 4 1/2 years old. I was hosptalized for a week, in Los Angeles Childrens Hospital and placed on a restrictive diet. At that time I was seen by Dr. Richard Koch- a leading expert on PKU and a pioneer in PKU research. I have had the honor of meeting him again as an adult. I've been off-diet since I was 5 1/2-taken off of it by my doctor at that time and my parents. Back then, they didn't understand the importance of life on the diet, like they do now. My younger brother, born in 1966, also has PKU-but I'll leave the details of his story to him to share, as he sees fit. Between my birth (in 1962) and his, we have 2 more siblings, without PKU. As Paul Harvey so often said, "And now...the rest of the story."

3 Reviews of How Kuvan Affects My PKU

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Good luck on Kuvan! I have been on Kuvan for 2 years. It has been a positive experience for me. I hope the same happens with you. If you should need any help or information, do not hesitate! I can’t wait to hear how Kuvan works for you.

  2. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Good luck! Like Katie, I have been on Kuvan for two years. In my experience I have seen nothing but positive results with Kuvan. Please keep us updated.

  3. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    I’ll be following this. I was diagnosed in 1963 when I was 6. I was wondering if Kouvan came too late for me.

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional