PKU

A short documentary on the genetic, metabolic disorder Phenylketonuria (PKU.) Gives a brief overview.

Category:

Entertainment

Tags:

• PKU
• Phenylketonuria
• Clare
• James
• metabolic
• disorder
• genetic
• short
• documentary

[pumpuriukas]

good video. thanx

[clarelj17]

you're welcome :)

[kbforeal]

yay pku! great job on this video! i have pku too and i believe its a blessing

[PrincessPKU]

@TheReolus OH! I should probably clarify that I am Breamarie91....just got a new account :).

[PrincessPKU]

@TheReolus (continued from previous post) that people have to pay for the amount over the budget. Kuvan is paid by insurance. However, Biomarin is wonderful about helping get insurance to cover Kuvan. I drink three formulas (I like variety) Bettermilk, Camino Pro, and Phenylade. These are given to me by my clinic. My Kuvan (which I've used for 4 yrs) is covered by insurance, but Biomarin has had to help me get financial help when my copay increased from $50 for 3 months to $400 a month!

[PrincessPKU]

@TheReolus It depends where exactly you live in the US. For example, I live in Wisconsin and here our formula and some foods (pasta, baking mix, peanut butter, and a few other foods) are provided through our hospital free of charge. Other than Wisconsin I think there are only three or four other states here that provide this kind of assistance. Other than that most people have to use insurance, pay out of pocket, or their state provides 'budget money' to each patient and outside of (continued)

[TheReolus]

@Breamarie91 Hi, is it true that MANY people in the USA with PKU are not treated because they don't have a healthcare insurance? Is it truth that, in USA, unless you have a lot of money you can't take kuvan or maxamum, for example? Is it true that healthcare insurances refuse to pay kuvan or maxamum? In Europe, (Spain, Spain is not Mexico, we are white and European) Kuvan and Maxamum are given for free. I'm have PKU and I take KUVAN and MAXAMUM.

[dementiaprecoz]

Hi, we´ve just made a PKU group for teenagers and parents with children with PKU on facebook. Search for PKU Youth or Jovenes PKUS if You prefer spanish version. U are welcome!

[Hwakefield4]

i have it too pku i use the add ins

[alanslytheprophet]

@jannabobable watch my video on pku. i cant walk now!!!

[mellyjames1]

i have pku and i have the cooler poppers. im 33 years of age and i tell ya i dont know how he has all those tablets everyday when he could have a simple cooler popper by vitaflo. look into it, it might be easier for you than all those tablets