Need Help To Get on Track

Need Help To Get on Track

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Need Help To Get on Track


August 19, 2009 in Uncategorized

I have PKU. I have had a rough childhood. I never met anyone else with PKU besides my older brother but he was born during the time that they didnt know much about PKU so he never followed a diet. Everyone teased me at school. But the older I got I started talking more and more about it and wrote alot of school papers so the kids could understand a lot better so maybe they will back off from me. My whole life I wanted to be normal so when I hit the age of seventeen I moved out of my mothers house and lived on my own. Thats when my diet just flew out the window I just thought that it was too hard to deal with. But I came to reliezed that I need to take care of my self and get back on track. Also, I noticed that I have been really irriated, moody, and get distracted alot. I have noticed that I have been forgetting alot of things including things you learn in school and just other stuff that you usually remember like passwords or other stuff. I have to tell some one else to remember stuff so if I forget they would be able to remind me. One other thing is that I have been depressed with life a lot lately and havent been very active anymore which caused me to gain wieght. I have tried to get health insurance to help me pay for the formula that I need and then some food products but every where I go they tell me that they cant help me. They tell me that it would be easier if I lived in Minnesota but I cant leave North Dakota I have my life here and its not able to re-locate. I really need the help for my sake really but also for my future child(ren). How am I supposed to get someone to help me to get the proper health insurance so I can start with that and then work from there?

3 Reviews of Need Help To Get on Track

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi LilBigz23.. I just read your blog and wanted to share some information with you that hopefully will help you in getting on track.. First of all, is there a clinic near you that you can see a dietitian for your diet? The dietitian can probably also help you with the health insurance piece. In the meantime, you should contact NORD (National Organization for Rare Disorders). They are beginning to help families with the cost of formula. If you are having trouble finding that information through the NORD website, you can also call BioMarin which is a pharmaceutical company. They are extremely helpful with setting you up with assistance. In the meantime, try to set a few goals for yourself….realistic goals! For example, eating low-pro foods 4-5 times a week… Once your levels begin to decrease, you will feel a big difference in yourself… try, try, try to start walking or some type of exercise… I find that alone can decrease my PHE levels a bit… hang in there! You will start to feel better :)


  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Also… I found a website which says that in North Dakota, formula is covered by insurance and medical food (about $3,000 is covered)…. Do you have any health insurance at this time? If you do, you need to tell them this and threaten them that you will report them if they don’t cover you… It is your state’s law that you should be covered.. it is essential you take the formula! They cannot deny you from it. Here’s the website….

  3. Registered: Aug 19, 2009

    Posts: 0

    No Location

    I agree with Katie hang in their & dont give up! GOD has a plan for you & others with PKU.
    My grandson is only a year old & he has classic PKU. They wee living in NC. were its alot
    of help with treatment & food. but they have move to AL. so my daughter can go to school & their
    is no elp @ all but im doing everthing in my power to change that & so should you! dont give up, get
    mad & push hard for your State to help you & other in your State. I will pray for you to have the strenth
    to get back on track!!!

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