PKU.com Community Discussion Forum Adults and PKU Any1 from australia and in their 20’s with PKU?

Viewing 13 posts - 1 through 13 (of 13 total)
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  • #7230
    Avatar of Aaron
    bryer187
    Participant

    Hi My name is Aaron and im 22 i live in Perth Australia, im currently taking PKU express and i was wondering if A- KUVAN the new medication is available in australia and B- if there are any people in australia or anywhere in the world for that matter that are around my age and have pku. When you get into your 20’s you feel like your the only one in the world with pku. thanks.

    #7254
    Avatar of Jonathan
    gotpkuclub
    Member

    MY NAME IS JONATHAN I AM 20 YEARS OLD I LIVE IN THE UNITED STATES I ALSO STARTED AN INTERACTIVE CLUB SO THINGS LIKE THAT DON’T HAPPEN ( YOU DON’T FEEL LIKE YOUR THE ONLY ONE). IF YOU WOULD LIKE TO JOIN THE GOT PKU? CLUB JUST LET ME KNOW THEN WE CAN GET MEMBERS OVER THERE IN AUSTRAILIA. WE DO ALOT OF THINGS TRIPS, MENTORING, IMPROVING FOOD SELECTIONS, FUNDRAISING, AND EDUCATING THE PUBLIC TO NAME A FEW, BUT THERE IS ALOT MORE! I WOULDN’T SEE WHY KUVAN WOULDN’T BE AVAILABLE IN AUSTRAILIA! nOUR WEB PAGE IS http://www.myspace.com/gotpkuclub SO YOU CAN GET A HOLD OF ME IF YOU WANT TO CHAT OR IF YOU WOULD LIKE TO SIGN UP. IT WAS NICE CHATTING HOPEFULLY I WILL HEAR FROM YOU SOON!
    JONATHAN, CPKU nGOT PKU? CLUB

    #7261
    Avatar of Aaron
    bryer187
    Participant

    hey johnathan. good to know theres other prolpe around my age in the same situation. your gotpkuclub sounds great, sign me up. i know there will be people around australia willing to join. Im gonna get my doctor to look at kuvan becuase im on pku express liquid at the moment and while it is better than most its stil pretty dirty to drink. thats the best medication we have here in autralia. Im gonna be going to the us and i’ll be spending a lot of time in cali so i will be looking for better medication for me and my brother.

    #7325

    My name is aaron and I just recently joined the pku.com this morn I feel the same way that most of you do that I am the only one with this but it is nice to know now that Iam not and have support around the world I have just sent a complaint form to my state ins commissioner to battle against insurance companies that will not cover the formula the problem is that the ins co is labeling it as a supplement which it is NOT! it is a medicalnecessity I am working with my doctors and nutritionists but I need everyone’s support out there with PKU to help I cannot do it by myself. Iam in AL if that helps

    #8148
    Avatar of Veronica
    vero_86
    Member

    Hi!!

    My names Veronica and am 22 years old. I'm from Sydney. I'm also really thinking about KUVAN. Have you been able to find out any more about its availability here? I'm going to mention it to my doctor next time i go to clinic.

    If you'd like a chat i'm here. Also, for the aussies, you could consider joining http://www.pkutree.com.au its basically the same as this but aussie version, but any one can join.

    #8194
    Avatar of Anna
    bannie
    Member

    #8195
    Avatar of Anna
    bannie
    Member

    Oooh YES!!! Great to see! I am also from Perth. My name is Anna and I'm 27 with classical PKU. YAY another PKU person from Perth! (This makes me quite excited, lol). Are you going to the PKU Pasta lunch day on the 12th July?

    Veronica: I'm on pkutree! I'm bannie on there as well. I'd really love Kuvan to come here, but I'm not sure how it would work for me since I'm classical PKU. We'll have to see…. whenever they get around to bringing it here!

    #8206
    Avatar of Breanna
    BreaMarie91
    Member

    Bannie, when Kuvan eventually gets to Australia there is still a chance that you'll benefit from it, despite the fact that you have classical PKU. I have classical PKU. I was on 300 mg of phe or about 6 grams of protein, and I responded to Kuvan.

    ~Breanna 18 CPKU

    #8660
    Avatar of
    Anonymous

    Hi everyone,

    I'm 26 with PKU and I live in Melbourne.

    I was at my PKU clinic last week and I asked my PKU doctor about Kuvan coming to Australia. She told me that they would absolutely and positively not be bringing Kuvan or any LNAA treatments like PheBloc, NeoPhe etc to Australia, ever.

    The reason cited for this is that PKU is easily managed with a low protein diet and that any additional treatment to that isn't necessary.

    I'm pretty furious about this and am hoping to campaign against this belief. For that reason I would be very, very interested to hear what other people's PKU clinics have said – please feel free to message me about this – both with any info you have and also if you would like to be a part of the fight to get Kuvan and other treatments to Australia!

    #8661
    Avatar of Breanna
    BreaMarie91
    Member

    Oh no Kate! That's awful! I don't see why a doctor wouldn't want to improve their patients quality of life if they can. Did she give you any other reason aside from the fact that PKU can be managed with a diet? Because although that is true, she needs to realize sometimes that isn't enough for some patients.

    Even though I'm nowhere near Australia you will definitely have to keep me updated on this!

    #8662
    Avatar of Anna
    bannie
    Member

    I'm going to ask my dietitians next time I speak to them. Actually I might email them. I have to tell them about my changed plans anyway.

    #8673
    Avatar of Aaron
    bryer187
    Participant

    Hey Bannie

    good to see someone else from perth. Its a small world after all, no i didnt go to the pasta day lunch. What formula are you on?

    #8701
    Avatar of Malany
    Glassie2010
    Member
    Kate wrote…

    n.

    I was at my PKU clinic last week and I asked my PKU doctor about Kuvan coming to Australia. She told me that they would absolutely and positively not be bringing Kuvan or any LNAA treatments like PheBloc, NeoPhe etc to Australia, ever.

    The reason cited for this is that PKU is easily managed with a low protein diet and that any additional treatment to that isn't necessary.

    OMG!! I just spoke to my mother about maybe getting Kuvan and other treatments availiable in the US, and she told me that New Zealand getting these treatment hinges on wether or not Australia gets them, as most of our low-profin products and other PKU treatments are shipped over from Australia. We don't get things from the US direct as we are such a small country with a small population of PKU.
    I believe that myself and plenty of PKU NZers would be glad to get behind any campaign because what australia gets affects us as well. If there is something that will make our diets and lives easier, we would like to hear about it, and have a chance of getting it.

    Ok cancel all that, I have now talked to some people and it seems our docter, Callum is fighting very hard for Kuvan to come to New Zealand. Which is pretty awesome. I really hope that Aussie manages to work something out too .
     

Viewing 13 posts - 1 through 13 (of 13 total)
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