National PKU News is no longer the clearinghouse for all things PKU

National PKU News is no longer the clearinghouse for all things PKU

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National PKU News is no longer the clearinghouse for all things PKU

July 22, 2009 in Uncategorized

Well, I have finally found a place where I can speak my mind! In our 2 year work with Kuvan, we have been met with nothing but negative treatment from the National PKUNews. I worked with Virginia Schuett to the best of my ability but have been rejected one too many times. My concern is that the PKUNews is supposed to be  "promoting exchange of information about PKU." That is  not being done and I SIMPLY want to make that statement. Parents, patients and practitioners needs to know that the National PKU News is no longer a clearinghouse of ALL things PKU. Many are quite aware of this fact but many new parents will be receiving the newsletter as part of packages for new parents. I am saddened by this. I appreciate what I have enjoyed from the PKU Newsletters. I will go on to describe the factual situation that led me to this blog. I am not embellishing, simply retelling. I have not received anything from BioMarin regarding this blog. They do not even know of our situation. The site has provided a place where I can tell the whole story and not have parts omitted and/or forgotten by Virginia Schuett. To start with, my son, Zachary, is almost 15. He has been on Kuvan since November, 2007. He is a responder. In a unique way to enter the PKU world, we were presented with Zachary's file and information when he was 5 years old. He was in state custody and needed a family. We were actually given the choice of taking this child with PKU or waiting for another child. After a quick PKU101 provided by the local clinic, we realized it was no big deal to us and said yes. The adoption was made final in September, 2000. I can honestly say that PKU has never been one of the larger issues in his life. When Virginia Schuett sent her email looking for kids to add to her Newsletter, I contacted her about Zachary. While a bit older than most of the kids in the newsletter, I felt that he was finally in a good place and could talk about his PKU. Ms. Schuett agreed to putting Zachary in the Kids of the Month section. As we wrote his story, we all agreed that his taking Kuvan was important. We respected Ms. Schuett's disdain for Kuvan and did not want to make an issue. So, we simply wrote one sentence, "I am taking Kuvan and it is working for me." The rest of his story was dedicated to everything else about his life. When the Winter, 2009 edition came out, Zachary's story was in the Newsletter MINUS that ONE sentence! Virginia apologized only for not telling me she was omitting that sentence. She promised to put him in the Fall 2009 Newsletter as she had already filled the Spring newsletter. When she put out a call for kids for the newest newsletter, I checked with her on putting Zachary into it. I received this " I am very sorry to say that I had completely forgotten about redoing the story and coincidentally just yesterday filled every space on the kid’s page." So, I am at a loss. I feel that I was more than polite. I did not run to the Listserv. I looked to her for ideas on how to fix this and followed what she offered. I guess by publishing this, I feel like there is a place where the whole story was told. If there is any concern about the facts, I can also publish copies of every email received by her and sent by me. I want to know about everything out there- good and bad. I want to know about any bad outcomes from taking Kuvan. I want to know the good in taking Kuvan. I want to know everything about every drug out there for PKU. I want to be able to get as much information as possible so I can make an individual decision- just like every parent does. I read her articles. I listened to the doctors and dieticians. So, when we sat down to make this difficult decision, we had the facts. She wrote this, "As far as providing a balanced view of Kuvan in the newsletter, I think that the positive aspects of Kuvan use are ones that most people can easily find out about elsewhere, and my voice is not needed to join the chorus." Where do we look? If we cannot look to the National PKUNews  for all information PKU anymore, where do we go?

18 Reviews of National PKU News is no longer the clearinghouse for all things PKU

  1. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    BreaMarie91- Thank you for sharing that information. I am FLOORED at the disregard Virginia Schuett is giving a growing population with PKU. I wonder if everyone knows that Ms. Schuett is shunning those who ARE on diet, yet are taking Kuvan. I think we need to gather more stories from people regarding this. Ms. Schuett has said very clearly in her newsletter that she will not cover anything about Kuvan anymore. I have also declined to renew our subscription. I wonder if BioMarin would consider a scholarship or a newsletter? You have seen great success with Kuvan and this is one of the only places you can share that. Our clinic has seen evidence of people on Kuvan having better organization and better moods. We have not seen that with our son but the clinic said everyone but our son has had a marked improvement in mood. I have yet to go to the Listserv but I wonder if an organized group of people supporting Kuvan information- good and bad, might make some impact on people’s opinions. Just thinking. For now, I am so glad I am hearing that we are not alone. Thanks, Stephanie.

    • Registered: Mar 15, 2015

      Posts: 0

      eugene, Oregon

      I want to know all about this drug so i can tell my doctor about it I am intrested in seeing if it will work for me

  2. Registered: Jan 21, 2008

    Posts: 0

    , Illinois

    I am pretty new to PKU.com so I apologize if this has been covered elsewhere, but why doesn’t Ms. Schuett want children and adults with PKU taking KUVAN? I feel like KUVAN has been such a BIG success for most people, and that it will only help those of us with PKU not hurt, so why is she so against it?
    (BTW, I am 24 and have Mild PKU – I have been on the diet my entire life, and I just recieved my first shipment of Kuvan and should be starting soon!)

  3. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Hi EmilyAnn- Welcome to PKU.com. Congrats on all the hard work of staying on diet.

    For the record, Virginia Schuett does not endorse Kuvan and has stated that she will no longer print anything regarding Kuvan. This is a serious problem for the PKU community. For her argument, I would encourage you and anyone else to read the articles here http://www.pkunews.org/research/research.htm These articles highlight why Ms. Schuett stands where she does. Understand, she is a minority opinion. While I respect everyone’s opinions, these are just not holding enough weight for me. She, as a person, is entitled to believe what she wants. But, she is taking the one major newsletter of all things PKU and purposefully using her editorial power to not cover Kuvan.

    After reading these articles, if you have any questions or concerns about starting Kuvan, talk to your clinic. Many have read these articles (as I have) and still decided Kuvan was worth the try. For my son, he is a responder and it has made a difference.

    Ms. Schuett will no longer print anything Kuvan (at least nothing positive). See Newsletter Winter 2009, page 13.
    Ms. Schuett believes that a person on Kuvan is not on diet for purposes of her scholarships. See BreaMarie91’s story.
    The PKU community just needs to be aware of these facts.

    Good luck with the Kuvan trial. Keep at it even if you don’t respond right away. You can swallow the pills whole. Also, if you forget to take the dose, you can still take that dose anytime that day, even in the evening. We have learned all of this with 2 years of Kuvan behind us.

    Stephanie

  4. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    The Listserv received an email from Virgina Schuett on September 29, 2009 requesting more kids for her page. Seeing that she had “forgotten” Zachary in the last issue, I asked her if there was room for Zachary in this issue. My email was sent within an hour of her post to the Listserv. Her response that came 2 weeks (she had been away from her office) later said that she was very surprised that I was still asking to add my son after “slamming” her at PKU.com.++++

    I do not consider any of what I have said here as “slamming”. I have only stated the facts of what has happened. Because of this, it is obvious that Zachary’s corrected story will not get into the PKU Newsletter.++++

    I am am very encouraged to see a lot of information going up on the Listserv. People are looking for information about Kuvan- good and bad. The Listserv is responding to that need.++++

    I would also welcome any response from Ms. Schuett regarding anything I have said here. I did not take it to the Listserv because I did not want to start a battle or divide our small group. I just want everyone to be informed. Many have read this post and its comments. I have not received any negative comments, although I do welcome any comments- good or bad. I have been a subscriber for years to her newsletter. I have respectfully disagreed with her opinion. I have supported her newsletter and her work for years. I was never told by her to keep our emails private. I would have been alarmed if she had. I even told her that I was coming to her before going to the Listserv to see if we could remedy the situation. If she would allow space, I would be glad to voice my opinion in a letter to the editor of the National PKU News. Actions, not words, are what have moved me to this point.++++

    But when a journalist/editor, who purports to discuss “all things PKU”, decides to exclude a population within the PKU community through her actions, it is my right to publicly call attention to that. This is not a personal attack. This is simply stating a fact and letting everyone make their own decisions about where to go for PKU information.++++

  5. Registered: Jan 18, 2010

    Posts: 0

    nashville, Tennessee

    hey there i have pku and i know where your coming from i my self when i was in high school did the same thing as he is doing. let me put it this way its not easy in high school with pku lots of tempto cheat and his friends don,t understand he just has to be stronger then the erge

  6. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Thanks Irishmen. It is tough to be a teenager, I know it! We just keep trying to set the right example. I like how you said he has to be stronger the urge. I think there are times he is strong, and other times he is not. I think we can ALL admit to behaving the same way. :) Thank you again for your suggestions.

  7. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Philly, thanks for those thoughts. We are very involved with NECPAD which is the New England group. I am glad the diet has worked so well for you. I am very impressed. I agree that Kuvan would not add anything to your diet plan. If it works great, don’t tweak it! I do hope more people go local to get more information. At the same time, it is good to know what national groups are out there and what their biases are. I am looking forward to hearing about the national conference from this past weekend. Thanks again for the thoughts. Stephanie

  8. Registered: Sep 4, 2007

    Posts: 0

    Aurora, Nebraska

    I am very surprised by Ms. Schuett choosing to “shun” the Kuvan-taking PKU population. I don’t think she would purposefully ever ignore ANYONE with PKU. I DO think she disproves of Kuvan and isn’t pleased with BioMarin, the producer of Kuvan. Although I disagree with her opinion, I must admit all the points she makes about Kuvan are valid (Kuvan hasn’t been proven to improve cognitive abilities in PKUers, and long term use studies weren’t done to determine if there could be potential side effects when used for extended periods). You have to admit, she has done her research and knows her stuff. She is a very informed, intelligent woman. I feel she is simply stating both sides of the story…She knows how excited the PKU population is to try a new form of treatment that could potentially change the way we eat forever!! She may feel that in our excitement, we may overlook the possible dangers of trying a new, nearly-experimental drug. After posting her opinion and receiving a response from BioMarin, I doubt they are on friendly terms with each other any longer. This could explain the reason she won’t discuss anything Kuvan any longer. (Just hypothesizing here, guys!! I really don’t know for sure!!) I feel we cannot ignore all the POSITIVE things Virginia has brought to the PKU community. My mother, and now I, have been receiving PKU News for as long as I can remember. It has brought me new, exciting recipes, the list of the latest low-pro foods, better formulas, stories about others like me, and ALWAYS new information about PKU studies, events, and developing forms of treatment at state, national, and international levels. Don’t forget, Virginia has also published a few low-protein cook books (with hundreds of recipes!) for us as well. She also sends me personal notes on my reorder form for PKU News. It’s a small sentence or two, but it demonstrates to me the type of person Virginia is. She took the time to write me a small note, and takes the time every few months to develop an informative newsletter for me that isn’t one-sided. I may not always agree with her opinions, but at least I know she’s telling me how she really feels and she’s not being paid off to sell a product or just jumping on a band wagon. I’d just like to remind everyone we DON’T have another source that does all that for us. Not that I know of, at least.

  9. Registered: May 27, 2009

    Posts: 0

    , Florida

    We have enough people with PKU who are intelligent and can do research from a PKUer perspective. Ms. Schuett cannot be the be-all and end-all. We need different perspecitves and more research, more options. There are new options on the horizon. We cannot reject them and just rely on what we have always done.

    I, for one, am excited about Kuvan and its potential. I have been off diet since I was about 11 or 12. I am returning to it now. I will try Kuvan and continue with a diet- my goal is a Phe level of 2 to 4. Right now it is about 14. I am also thankful to BioMarin for making PKU.com available. It is better than FaceBook to me.

  10. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    I completely agree that Ms. Schuett has done a lot for the PKU community. I have never said otherwise. I am not attacking her personally as she claims. That is why I published the facts and let everyone make their own decisions. I am asking about the purpose of the PKU News and the Guthrie Scholarship which happened to be run by her.

    My main concern is that she is one-sided when it comes to Kuvan. It has been 2 years since her statement about keeping ANY news about Kuvan from her Newsletter which purports to be “promoting exchange of information about PKU.” Yes, she had some facts…then. It has been 2 years. Let’s look at the studies that are going on NOW. Let’s see where the adverse side effects are. Let’s publish this information…good and bad.

    My other concern is the bias against people on Kuvan. Ms. Schuett, what is the criteria for being “on diet” for the purposes of the Guthrie Scholarship? From what has been said here, being on Kuvan does not equal being on diet. That is a problem for me. Is that going to be the same problem for people on PegPal or PheBlock? Why?

    We all need to adapt with time. We need to accept that new things come. We need to explore them completely and keep checking up on them to ensure the best possible outcome for people with PKU.

  11. Registered: Oct 9, 2010

    Posts: 0

    BELLEVILLE, Ontario

    MY WIFE AND ME HAVE BEEN INVOLVED IN PKU ISSUES FOR OVER 40 YEARS AND HAD MANY DEALINGS WITH FOOD PRODUCERS, MEDICAL PROFESSIONALSAND THOSE PROMOTING PKU TO THEIR OWN AIMS. WE MUST STATE PKU IS A LITTLE KNOWN ABOUT DISORDER THAT THE MEICAL FIELD IS GAINING KNOWLEGE ABOUT EACH DAY. SURE THE NET IS FULL OF FALSEHOODS, POOR INFORMATION AT TIMES, BUT THE PKU PATIENT IS WERE EVERY BID OF INSIGHT COMES FOR. THESE INSIGHTS IN THE HANDS TO THE MEDICAL HAS LED TO SO MANY ADVANCEMENTS. OUR INVESTIGATIONS OVER THE DECADES INTO THOSE KNOWING ABOUT PKU IS ” DON’T MAKE WAVES.” HOWEVER, WHO IS RIGHT AND WHO IS WRONG ? MOST PROFESSIONAL THAT ARE CONCERND WILL TELL YOU HONESTY ” I KNOW LITTLE ABOUT PKU AND READ A MEDICAL BOOK ABOUT IT I THINK. THE TRUTH IS ITS LIKE A CHURCH WITH LOTS OF PEWS AND YOU SIT DOWN BUT NEXT TMIE YOU SIT ELSEWHERE — SAME CHURCH DIFFERENT SEAT. PKU IS THE CHURCH AND EVERTHING ELSE THE TREATMENT AND SUCH ARE THE PEWS.

    SO SIT WHERE YOU WISH BUT LET OTHERS SIT WHERE THEY WISH AND FIND PEACE THAT YOU KNOW YOUR SO SO RIGHT. DON’T GET MAD JUST KEEP PASSING ON THE GOOD WORD BASED ON YOUR BELIEFS. THERE IS A BOOK ON AMAZON.COM NAMED PKU MOM THAT MY WIFE WROTE READ IT SOMEDAY OR CHECK OUT YOUR LOCAL LIBRARY AND KNOW WE ARE THERE FOR ALL PKU SUFFERS ———- HAY ! YOU GOT A STORY THAT NEEDS TO BE TOLD, WE CAN POINT YOU IN THE RIGHT DIRECTION.

  12. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    Hi Mass PKU Mom.. i am in Mass also.. I have had very bad experiences with Mrs Shultsz… I have heard of her threatening to sue others about her Food list.. Shes in it for the money i see.. she has no feeling what so ever about PKUers.. I also have PKU.. i am on Kuvan.. and it has worked for me for over 4 years now.. Please email me i would like to talk more to you.. WesternMassDJ@verizon.net I have a web site where you can voice all you want.. I have a section called .. THE GOOD BAD AND UGLY of PKU.. and also a section called PKU EXPOSED.. which highlights all the horrible things i hear from People about what Drs say.. to them.. i dont hold back at the expence of looking good for the Professionals.. please contact me..
    talk to you soon i hope…

  13. Registered: Nov 3, 2009

    Posts: 0

    , Massachusetts

    another thing.. BioMarin has done more in 1 day then Mrs schultz has done.. any day or yr.. I know for a fact on her web site it tells about how Bad Kuvan is.. and NEVER TAKE IT.. she is using a scare tactic to spread her spue… I am very upset with her.. and how she is out only for herself.. her focus is NOT to help or care for PKU people.. grr i wont say any more.. BioMarin is the Most Amazing and Most helpful Industry in the World for PKU.. HANDS DOWN! Thank you BioMarin.. :-)

  14. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Hi ThePKUChallenge,

    Thanks for commenting. I do stand by everything that happened. I am very comfortable with what I have said here and don’t need to print it anywhere else. Thank you very much for your offer though.

    Hi WEC4U,

    I was a little confused by your message but I appreciate your comments! I believe that an open dialog is very important.

    _______

    With a disorder such as PKU, we need to spend our entire lives growing with the information that comes from advancements. If we had stopped in the 1980’s, think about all of the new formulas, foods and drugs that we would not have now. So, an open mind is very important. It is exciting to think about what might come in the next decade or the one after that in the study of PKU. We can’t just hold our thinking to the guidelines we used 5, 10, 15, or 20 years ago. It evolves and we have to also.

    I have been criticized by Ms. Schuett and have asked her to comment here to no avail. To this day, I do stand by my post. I still have the emails sent by her. I don’t hate her or wish her ill will in any way. I applaud all she has done. I ask her to continue to grow in her understanding of PKU and technology just like the rest of us have to. Until she can justify publicly and in writing why she shuns a portion of the PKU population, especially with regard to the definition of being “on diet” for the purposes of scholarships, I cannot subscribe to her newsletter.

    For some of the other posters here, Ms. Shuett has not done her homework in years and she is not telling both sides of the story. Has she had any coverage of people on Kuvan after more than 2 years? Her website posts regarding Kuvan were last dated in October 2008. Let’s hear what is going on with some of the people who have been on it for some time now- any good experiences? any bad? It seems she can only write out against Kuvan. She wrote personal notes on my subscriptions too but it does not change the fact that she does not consider a person with PKU on diet if they take Kuvan, according to one of the posters here, even if that person has perfect levels. Imagine how that person felt after relying on Ms. Schuett for years for information, support and news.

    Keep up the good work everyone! And, don’t forget, drink your formula! :)

  15. Registered: Sep 28, 2016

    Posts: 0

    No Location

    I’m sorry, but is this a forum on a Biomarin-sponsored site that is promoting Kuvan and bashing its critics? Doesn’t that seem like a bit of a conflict of interest? This all seems very shady to me, and I can’t blame Ms Schuett for wanting to distance herself from such a company. Certainly doesn’t instill any confidence in me. I guess it’s just as well that my province will never cover Kuvan!

  16. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    K,

    Wow, it has been a while since there was any comment on my post. I guess you just opened up the can of worms again, K.

    I am sorry you did not understand what my post was about. You also did not read all of the comments and my last comment on the posts. While written back in 2009, I still stand by every word. I am not bashing Ms. Schuett, nor promoting Kuvan.

    I stated facts. I provided quotes of what I was told by Ms. Schuett in her capacity as the editor of the PKUNews. As a parent of a child with PKU, I was seriously concerned about her decision to shun children who chose Kuvan. She, at that time, did not consider someone on Kuvan to be “on diet”. I had an issue with that. How does she feel about Kuvan today? What about those on Peg-Pal?

    I purposely chose not to take this debate to the Listerv back in 2009. But, I wanted to make it clear to all in the PKU Community that the PKU News purposely chose, and stated clearly, that they would not cover anything about Kuvan.

    Up until that time, I was a huge supporter of the PKUNews, since 2000. I couldn’t be any longer. I felt it was wrong to shun certain segments of the PKU population while stating that they covered “all things PKU’. I shared that opinion here as I have a right to do. I encouraged Ms. Schuett to explain her reasoning.

    Since that time, I have run into parents and PKU children who struggle with their diet. I think they should be supported and not shunned. Many adults with PKU go off their diet. A newsletter dedicated to all things PKU should be covering that struggle as well as all of the tools we now have to help them maintain a low protein diet- including Kuvan, PegPal, a huge assortment of formulas and whatever else comes down the line.

    I am a parent. I am an advocate. I do not work for Kuvan and would happily post this somewhere else. At that time, this seemed to be a better place than the Listerv. The fact that BioMarin sponsored this site had nothing to do with the post. I wish the PKUNews would change their stand so I could support them again. If their position on the definition of “on diet” includes the use of Kuvan and other medications, I would love to hear it. If we could read honest accounts about a teen’s or adult’s struggle with diet, it would be wonderful.

    There is nothing shady here, K. Just a concerned parent worried about ALL of the PKU community. I’m glad I could clear that up for you.

  17. Registered: Sep 28, 2016

    Posts: 0

    No Location

    Found your site while looking for PKU News on Google. My granddaughter has PKU and I am interested in supporting her parents so I am researching. Also this is genetic and therefor (despite the direction of medical professionals that we shouldn’t worry about that) I am at least interested in other side effects. I have noticed a strong urine smell in diapers of other members of the family (typically during times of physical and emotional stress).
    We are in the beginning of the PKU journey but I embrace a site in which the people on the front lines can be honest and open. We are strong – and smart together. Science requires observation and unedited documentation.
    I hope this post will not prompt anyone to expect me to be a super involved advocate. I will be a grandchild advocate.

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