7 Year old daughter with thal b minor

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7 Year old daughter with thal b minor
« on: January 16, 2011, 09:30:51 AM »
Hi Everyone

Am Mum to a 7 year old girl with Thal B Minor which I have known since she was born.  My husband (Greek) has thal b along with most of his family.  In greece, its the norm, people dont talk about symptoms but the all have a good diet.  The only advice my daughter doctor gave was that she should have no symptoms or problems and that she should stick to a good diet high in iron and to explain to her about getting future parter screened.

That was It,  I have always noticed that my baby is smaller than all the other kids, is tired more easily than the other kids, but until I found this forum, I just knew something was different but didnt know why!!

So many of the things she seemed to suffer from as a baby and doctors thought i was mad!!  Its a relief to know Im not mad after all, but somethings i still dont understand.  Whenever shes been ill and the appetite goes, then she really starts to get tired.  It takes weeks to build up any energy level again (Is that me or do others feel like that?)  She has been trying to tell me for a few years that it feels like she cant breath (That happens when she is tired and as her dad used to complain of the same thing im guessing its down to thal b but im not sure) cant catch her breath feels like she cant yawn (But i dont quite get what she means)  she had problems with stomach pains since birth, had really bloated and painful stomach on and off for years, was tested for everthing but all came back clear but she still gets bad cases of constipation and drinks tonnes of water.

Realy pleased Ive found this forum, hope I can finally start to understand my little girls thal b a bit better.  Any advice welcome, need to know how you all feel.!!           

Re: 7 Year old daughter with thal b minor
« Reply #1 on: April 13, 2011, 06:01:03 PM »
Welcome to our forum.

I am a beta thal minor and have a beta thal intermedia 6 year old daughter. I am of Greek descent too. For Minor's a good healthy diet, plenty of greens, vegetables, fruits etc helps. We are typically low in B12 and Folic Acid. Most of us do not have low iron, though this is a frequent misdiagnoses.

I have one functional beta hemaglobin gene. This means I have 1/2 the oxygen capactity of a normal person. I do tire out quicker. The red blood cells turn over quicker, but not as fast as a major, so the spleen can get enlarged too. I need to maintain good cardio health to function bets. I too have had those hard to breath incidents. I can not over excert myself like an elit athlet. I am a very active mom of two kids and even though I do tire out I can keep up, so day to day oxygen capacity is fine.  I don't smoke or do anythign to affect lung capacity.
Keep reading I am sure others have more to share too...

Alexia.

 

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