I find it funny.

I find it funny.

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I find it funny.

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November 7, 2010 in Uncategorized

I find it funny. There are so many different diseases/conditions that get so much attention in the medical world. Aids, Cancer, Diabetes, Tuberculosis, Swine flu. etc. But there is never any mention of PKU. I guess it's just because we're so few compared to others. There is no known cure. I've asked my specialist before about studies. I was told they had been experimenting with a medication that acts as a Phe blocker. But its even more inconvenient than the medication some of us already take. Many times I have told people numerous times that I have a condition called PKU. Hardly anyone knows what it is, even some in the medical profession. So throughout my life I've learned to avoid having to teach people basic bio chemistry. Instead of telling them the whole process of it all, I usually just make up excuses like, "Oh it's just a protein shake." or "I can't eat red meat because it upsets my stomach." But after years of saying this to friends and co-workers, I have realized that I'm lying to both them and myself in a way. As a child I was scrutinized by my peers because of this condition. Singled out, and in a few cases humiliated because of it. Which is why I have turned to changing my life story. I was told by my dietician that, she would recommend I eat every 4 to 5 hours. Because if I go too long without eating my body will begin to fast, which in turn will cause it to breakdown stored nutrients, which will in the long run supply me with proteins which will contain Phe. Therefore it is unhealthy if the majority of my days contain "fasting". Which quite a few of them do. I work full time as I am making my way through college. My days usually do not permit me to eat at regular times or take my medication at regular intervals. I wonder if anyone else has this problem? All I'm saying is that the whole "eating at the right time" and "taking your medication at the right time", this all really sounds to me like a condition that isn't entirely resolved. It almost seems as if medical professionals have deterred from it because theres a way to sustain it. But what's the point of putting a bandage on something if it's never going to heal? And there are a few patients who decide just to take the bandage off all together. I hope one day this condition is recognized by the general public. People may call me ignorant, and self centered just because I have this condition and am hoping this. But think about other conditions/diseases. At one time they were misunderstood and ignored. But now all of a sudden they're a "big deal". Everyone started flippin their shit about autism about a year back because they found out its more occurrent. I've even heard of studies that apparently by 2020 1 in 4 children born will have autism of some sort, from mild to severe. It just really seems like nobody really cares until it's "their" problem. And I'm just saying you never know. There could be alot more carriers than people think out there.

5 Reviews of I find it funny.

  1. Registered: Sep 8, 2009

    Posts: 0

    , INTERNATIONAL

    Hey

    I understand what you mean… I mean i was at my Doctors other day for another medical issue and my doctor is like so u have PK erm PK and am like yer i have PK U.. Now thats MY Doctor who’s ment to care for me, i think its a disgrace, i mean has she actually been reading the letters coming from my PKU Consultant or are they just blanked and put into a file???? i begin to wonder sometimes, i asked this question to my doctor jst other day is my body aching and me feeling tired down to being relaxed on my PKU Diet and shes like Erm…am not sure, what do u think??? shes asking ME what do I think.. its a joke and i think it terrible medical proffesionals dont actually know alot about it??

    Sorry if i jst ranted on lol ur blog gave me a good reason to let off steam LOL x

  2. Registered: Nov 7, 2010

    Posts: 0

    Nanaimo, British Columbia

    haha That’s ok, that was kinda the intention of my blog. So other could comment and let off some steam as well :)

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Unfortunately that is just how the world works. Is it fair? Maybe not, but it is how it is. Conditions such as cancer, diabetes, autism, etc are so prevalent today that it makes sense that these conditions are well known. In fact, I bet everyone on this website knows at least one person who has been affected by one of these conditions. I for one know two people dealing with cancer right now, have many family members with diabetes, and I teach a little boy with autism. Society is more apt to recognize an issue or medical condition when it affects society as a whole. How many times a day do you meet someone walking on the street who has PKU? Almost never.

    As far as doctors go it can be frustrating. However, many doctors learn very basic information about rare disorders, because they simply do not have time to go into depth. Medical students would have to be in school for an extra decade or more in order to learn about each individual genetic disorder. Thus the reason we have specialists to turn to ;). My suggestion would be to just go to your specialist for PKU related help rather than a primary physician. Your family doctor isn’t going to know much about PKU, because that isn’t what they were trained to treat.

  4. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    I agree totally with you AND Nicole, but BreaMarie91 also has a point! Not EVERY doctor could possibly know about EVERY condition and EVEY disease! I do agree that our OWN doctors should really know about them if they are treating us. I have to go to my GP to get all my Low Pro foods, and he never knows what I am going on about! I try not to get frustrated though, because I just think, if I got so up tight about all the things that annoy me, then I would be a very stressed and unhappy person!

    I also agree with you about the whole “fasting” issue with work and days out! I have to have my suppliment 4times a day and so when it comes to days out, I have to either plan where I am going to go 2fit my suppliment in. Or else I just avoid them all together!! (days out I mean, not my suppliment!!)

    I do feel like my whole life at the moment is, make up my maxamum, eat, drink my maxamum, make another lot, eat a bit more, drink my maxamum, eat somethig else little, drink some more maxamum!! … lol you get the drift! And so I do wonder if some people in my life REALISE how tiresome it gets sometimes! And I think “there must be more to life than this!!”

    I hope this has made you feel a bit better about the whole situation. Until I found this website I really thought I was the only person in the world with PKU! It is so good to know there are others out there, just the same as me! Just as fed up with it all as me!! Thank you for being here! =) x x x 

  5. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    first Do NOT get me started on autism. I’m sick to death of hearing about it! *takes deep breath* I know where you’re coming from though. when i was pregnant i told the OB i have PKU and she had no clue what i was talking about. i just said “forgrt it” and took my chances. fortunately my 3 children and 4 grandchildren don’t have it and are generally healthy. I just avoid talking about PKU.

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