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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Sun Jun 19, 2011, 02:46 PM
TheCursedOne TheCursedOne is offline
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PNH and stunted growth

I am the only seventeen year old in the country with this terrible disease and I know what it does and how bad it is so I dont need an introduction. It has made me chronically weak and sick and unable to be normal like others and I have had this disease since I was 11 yrs old.

I was wondering is it possible that constant hemolysis and anemia over all these years can stunt a persons growth below what it would be otherwise? I always thought I am quite skinny since I got PNH too. Thanks any answers would be good.
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  #2  
Old Sun Jun 19, 2011, 04:48 PM
mharrell mharrell is offline
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You're not the only young person dealing with PNH. I urge you to join the group at http://www.pnhdisease.org/index.php. There you'll find a lot of people willing to give you information and support. Sometimes one of the worst things about PNH is feeling like you're all alone because it's so rare. There are people in the PNH support group who have had PNH since they were kids, and young PNH patients and their parents who post there.

Sorry, but I don't know the answer to your question. Ask it over on the PNH group and I'm sure you'll get replies.
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Old Sun Jun 19, 2011, 07:23 PM
Neil Cuadra Neil Cuadra is offline
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Yes, I think that PNH can stunt growth, simply from your being chronically ill, rather than as a direct result of the PNH mechanism. The way I think of it, your body had to fight and endurie PNH so it couldn't give full attention to helping you achieve full growth.

As mharrell says, you're not alone. I've met other young PNH patients and I hope you will too.
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  #4  
Old Mon Jun 20, 2011, 05:46 AM
TheCursedOne TheCursedOne is offline
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Yes that could be one factor. But wouldnt anemia deprive you of the oxygen and nutreints needed to achieve maxiumum growth? Because thinking about it even if you have transfusions of blood - your hb will always be on average lower than a normal person without PNH so could make you slender or smaller in size.
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  #5  
Old Mon Jun 20, 2011, 11:28 PM
Neil Cuadra Neil Cuadra is offline
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We're patients and caregivers, not physicians, so it's worth asking your doctor about this. Then you can tell all of us!
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