Carly+B’s+Final+AmEx+2013+Speech

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Well I had written an amazing speech a couple of days after we were told about out final project but alas my computer decided to die from like 700 viruses I didn’t even know it had. My entire computer memory was wiped out when it was fixed. Yes my computer works as if it were brand new but all of my hard work over this year and years previous is gone, including my original speech. I was not smart enough to send my finished speech to myself through email, buy I now know to save things in more than one place… Now I’ll attempt to remember all that I talked about in my first speech.

I live my life everyday with a constant struggle that not a single one of you can imagine. I have an extremely rare medical condition by the name of Phenylketonuria. I like hearing people try to pronounce a couple of words so can you guys say phenylketonuria? Phenylketonuria is a pain to say as you now know so I’ll says PKU instead. Now I know many of you do not know what that is and you are not alone, even people in med tech didn’t know what it was so I will explain what it is and how it affects me.

So, I cannot eat protein more specifically the amino acid phenylalanine or phe. Yes another word that’s hard to pronounce. I would like to address a rumor I have heard about me from those who think they know about PKU. NO I am NOT allergic to protein. I don’t show any kind of physical symptom just mental. I have a very horrible memory for one but having too much protein in my system mostly affects my brain development. It could have been worse when I a baby because I had to be on a strict diet of low phe foods. If not then mental retardation would develop because phe levels would build up in my brain before the brain in fully developed. All protein has some phenylalanine in it. When you read the nutrition facts on something simple like a snack size bag of chips, which I am sure you all take for granted, it will say 2 grams of protein. People with PKU can have less than one gram of protein a day. That bacon you crave? I have never had it because it has 16 grams of protein in a single strip. Animal protein is the worst thing a person with PKU can consume. I have never in my life consumed a hamburger, hotdog, chicken, steak, bacon, ham, or turkey. I have also never had yogurts, milk, nuts, eggs, fish, beans, cottage cheese, tofu, soy milk, peanut butter, mayonnaise, or anything with artificial sweetener like NutraSweet in diet soda or diet tea. Since I have never eaten these things, my brain development has been mostly normal. PKU does not only affect me. It will affect my children as well. Having high phe levels as a pregnant woman can harm an unborn child. This is because high phe levels are being transferred to the baby through the umbilical cord. The high phe levels build up in the brain and cause mental retardation before the child is even born. It could also cause babies to have seizures, heart disease, facial abnormalities, and more. Life will never be easy for me.

You may be wondering how I get the necessary protein for my life. Well I should be drinking a special formula but I have not been for several years. I have been way off my diet since it has become less of a preoccupation.

I want a way to regulate my phe levels other than through diet. The strict diet is a pain in the ass and is almost impossible to follow. When I was around the age of nine I participated in a study for a new medication for PKU. The doctors never told me that the medication probably would not be affective for someone with classic PKU like me. The medication was more for people with hyperphenylalanemia, the lesser form of PKU. I endured blood testing weekly which would not have been so bad if I was not horrified of needles. I did this for a month only to be told I was not a responder. It has been around 8 years since then and the drug from this study, Kuvan, is now approved. Eight whole years have passed and no other drugs have been approved. That is ridiculous. This disorder is so rare and there is little to no community support. I learned that there is no PKU event, like a fund raising walk, in most of the United States but there is one in Tennessee. Without fund raising, research cannot be done. You need to care about this because no one is immune illness. Even if you don’t have a genetic disorder like me, you could become ill with something just as serious.

In the America I want to grow old in, I want to see more community support and fund raising for obscure disorders and diseases so that research can be done to find new medications. Just because I have a disorder that is rare does not mean I am less important than those who have diabetes or even cancer. I want to be able to grow up health like anyone else. Any new medication that could lower my phe levels would change my life forever. Maybe one day there will even be a cure. Thank you.

=Cite Your Sources=

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PKU News: Risk of Poor Growth in Maternal PKU Offspring