Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > PNH
Register FAQ Search Today's Posts Mark Forums Read

PNH Paroxysmal nocturnal hemoglobinuria

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Jun 19, 2011, 03:46 PM
TheCursedOne TheCursedOne is offline
Member
 
Join Date: Jun 2011
Location: Oxford
Posts: 3
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.
Reply With Quote
  #2  
Old Sun Jun 19, 2011, 05:48 PM
mharrell mharrell is offline
Member
 
Join Date: Dec 2008
Posts: 11
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.
Reply With Quote
  #3  
Old Sun Jun 19, 2011, 08:23 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
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.
Reply With Quote
  #4  
Old Mon Jun 20, 2011, 06:46 AM
TheCursedOne TheCursedOne is offline
Member
 
Join Date: Jun 2011
Location: Oxford
Posts: 3
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.
Reply With Quote
  #5  
Old Tue Jun 21, 2011, 12:28 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
We're patients and caregivers, not physicians, so it's worth asking your doctor about this. Then you can tell all of us!
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump


All times are GMT -4. The time now is 10:38 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org