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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2017





54216 Posts in 5703 Topics by 5803 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Thalasemia and bone problem.  (Read 597 times)
Reen
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« on: October 24, 2017, 01:14:01 AM »

Hi everyone.

I was diagnosed that I'm having Thalasemia HbH Diseased when I was 27 yrs old during my 1st pregnancy. Now I'm 45 yrs old and at the same time having problem with my spine. Prolapsed Invertebral Disc at cervical spine (C4, C5, C6, C7) and lumbar spine (L4, L5, S1).  I'm no longer active in doing housework, sports and i have to let go my career because of the spine problem.

My question is.. does bone problem in my body more or less related to thalasemia? My orthopaedic said to me that I am his special patient since I have both Thalasemia and PID problem. He has to be very carefull in giving any treatment to me.

Thank you.
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Andy
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« Reply #1 on: October 25, 2017, 05:18:30 PM »

There is most likely a connection, as the lower Hb affects the bones, causing expansion and weaker bones. Do you transfuse?
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Andy

All we are saying is give thals a chance.
Reen
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« Reply #2 on: October 31, 2017, 04:02:12 AM »

No. Never do any transfuse so far.  My hemoglobin normally around 8 - 9. The lowest reading is 7 but only once during my blood test series.  After taking some rest at home for a few days with medicine, i'll be much better.  Next 2 weeks my second son will be going to do some details blood test due to his low hemoglobin. I guess he might be having thalassemia too but maybe as a silent carrier or alpha thalassemia trait as my husband is free thalassemia. The doctor had asked to bring all of his siblings to do the  test.

I'm doing physiotherapy due to my spine problem but i'm not on the physical exercise. I'll be weak, feel so tired, dizzyness eventhough  a little bit hand massage on my body. My 2nd brother also has Alpha Thalassemia HbH Disease but he has problem on his hip-joint for about 4-5 years. Right now his spine is starting having the same problem like me but at the early stage.


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Andy
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« Reply #3 on: October 31, 2017, 03:46:56 PM »

It is almost certain that the bone problems are related to the low Hb. Transfusions are not advised at your Hb, so the main thing you can do is to take high doses of folate (not folic acid, but the natural form as folate) and B12. This may help to raise your Hb a bit. I would suggest 2-5 mg L-methylfolate and 1000-2000 mcg sublingual B12 daily.
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Andy

All we are saying is give thals a chance.
Reen
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« Reply #4 on: October 31, 2017, 10:00:26 PM »

Definately. Thank you for your suggestion.  :-)
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