New member from Wollongong Australia

Hi to all,

Just posting an intro into this great site. By just reading some of the posts it has helped me understand Thalassemia better. I have Thal minor and so has my son. I can honestly say without question that it has never really bothered me, or my son for that matter,except for the occasional bout of tiredness and that is mainly after exercising.

It seems as though I am lucky when I compare with others in this site and I can really feel for them. I wonder why there are some with more symptoms with Thal minor and cases like my own without. I suppose everyone is different and the lesson to be learnt is not to take things for granted as things can change anytime. For all of the ppl here with Thal Major and Intermedia who are really having to cope with more than the Minors, I wish you all the best in your quest to overcome your feelings and hope you live well without too many problems.

Cheers
Chook
 

Hi Chook,

The amount of symptoms thal minors have is usually related to the specific mutation they carry. Some mutations cause a severe drop in the amount of beta globin produced by the affected gene, resulting in a noticeably lower than normal hemoglobin level. These people will generally experience more symptoms, especially as they age, regardless of what the text books may say about thalassemia minor. Other minors have only a small drop in hemoglobin level and may not even be aware that they are carriers.

Hi Andy,

Nice to meet you and thanks for highlighting more on Thal minor. This is a great site and with your expertise it is in good hands. Obviously I must be one who only has a small drop in hb levels. While your there, I did post a question regarding my son on the Chatter post. If you can help me with this it would be greatly appreciated.

My Son has Thal Minor as well and wants to go into the Navy. He did mention that he had Thal Minor and because of that they questioned what it was as it sounds like a disease as you are well aware. At first they rejected hiim on those grounds until a Haemotologist confirmed that it wasn't a problem to have, but his iron level was down to 8. So because of this they said that they wouldn't allow him to do the beep test, which is a shuttle run he must pass in order to get into the Navy. It is frustrating as he has passed all the other requirement, test and interview etc.

My question is what is normal range iron level and how should I help him achieve the level required. I have put him on an iron supplement in liquid form ( Floradix Formula ) and a multi vitamin
( Centrum ). Is this ok to help him or should I stop the iron as I have found that for some Thals Iron is a no no.

Regards
Chook

 

Hi Chook,

Welcome on the forum,Although your son's iron seems to be low, but it would be better to do full iron studies before starting iron supplements,do you know what's your son's hb? Plus folic acid is a must for every thal,it strengthens red blood cells.

Feel free to ask whatever questions you have in mind.

Zaini.

Hi, I'm in North Queensland and waiting to find out the results of my 3yr olds tests, hopefully tomorrow. It's been the longest 6 days of my life.

Glad to hear that you and your son are enjoying a full life, I sure hope that he gets into the forces.

Well I guess tomorrow will see how often I will be on this website, we go to Townsville tomorrow for tests for as he has duplex kidneys and is getting ready for surgery to hopefully control the problems he has with that.

Talk soon, God Bless you and your son

Welcome! Debbilee and Chook, You have come to the right place. 

Hi Debbilee and Lyanne and thankyou for your posts.

This is for you Debbilee, I am happy to say that we have finally got my son's iron level up to an acceptable level that can allow him to do his fitness test. So we are both very happy about that.
Our problems are insignificant compared to yours and I can only offer my support for you and your family with regards to your son. I wish him to have success with his operation and hope he doesn't have too hard a time after the opreration. Also, I would hope that the long term prospects for him are good. It must be so hard for all of you and I can understand your concerns fully. I can only say that I have faith in the medical profession as they are wonderful with what they can do today. Keep your faith as well.

Warm regards,
Chook

Hi, I am also originally from Wollongong and I only found out that I had Thalassemia Trait when I was pregnant with my first child who is almost 3 years old.  She also has Thalassemia Trait. My second baby girl who is 10 months old unfortunately has Thalassemia Intermedia (at this stage) so we are taking her to Westmead every 6 weeks for blood tests. Poor little thing. It was a big shock to find that out as we didn't expect it or really know much about it. It's really hard when we don't know anyone in the same boat as us as we don't really know what to do.

Hi! welcome! No worries you've come to the right place...... Just ask away your questions, feel free to lay out your concerns.That's why we  are here 

Hi Katias Mummy,

Welcome on the forum,i hope your daughters are doing well,how was your daughter's intermedia diagnosed? Did you do a DNA test of her? and what level of hb she maintains,read through the posts here on the forum and you'll find many things that can help people with thalassemia,either minor,major or intermedia.

Zaini.

Hi Katias Mummy ,
  , i hope you're getting the answer of your concerns and questions .. Good  Luck for everything especially ur your kid ..

Best Regards
Umair

Welcome Katias mummy,

We are all here to help.  Sending best wishes to your little girl.

Sharmin

Hi Katias Mummy,

I don't know if you aware of this, but if your child has thalassemia intermedia, in most cases this means that both parents are thal trait carriers, just as is the case with thal major. This is very important should you desire to have more children. The father should also be tested and your children should be made aware of the implications of being a carrier so that they can make informed decisions about who to have children with when they are of age.

I would also recommend you contact your local thalassemia association. You can find a list at http://www.tsv.org.au/scripts/default.asp?idPage=27
You will find you are not so alone and it will give you the opportunity to talk to other thals in Australia (we know many).

My husband also has the thalassemia trait. We found out that Katia had Thalassemia intermedia as I took both the girls to have the test done just incase. My other child had just the trait but Katia has the intermedia which was a huge shock to us. Her Hb level is at 74 (i think that's the right number) They said she is making a small amount of red blood cells and they are really happy with her development as she is very active and growing well. I hope she keeps it up. Does anyone know how far away a cure is for Thalassemia??