Thal major - do's and dont's

Hey all,

I'm just curious about what I should avoid as a Thalassemia major patient.

Being a 23 year old male, I drink excessively very often and I'm a full time smoker.

Does alcohol and smoking affect us anymore than it does other people? Also, would any of the mainstream drugs affect (such as weed and ecstasy) affect us any differantly?

I've also had bad experiances with drugs, the last time I did weed I had a minor stroke, apparantly the doctors said it had nothing to do with my Thalassemia. Ever since then I haven't touched any drugs.

Has anyone had any similiar experiances?

Sorry, I also have more questions for you great people :D

What is the average life expectancy of us Thal Major patients that have had constant treatment (desferall all my life until a recent switch to exjade) and blood transfusions every 6 weeks.

I asked my doctor and he said mid 30's, is this true?

Also, when will I start experiencing pain and etc...?

Thanks in advance fellow Thal patients 

Hi VAnn,

I found something that might be of interest to you.


From Gene Reviews:
Agents/Circumstances to Avoid

The following should be avoided:

    *

      Alcohol consumption, which in individuals with liver disease has a synergistic effect with iron-induced liver damage
    *

      Iron-containing preparations

Hope this answers some of your questions.
Jade

Sorry, I also have more questions for you great people :D

What is the average life expectancy of us Thal Major patients that have had constant treatment (desferall all my life until a recent switch to exjade) and blood transfusions every 6 weeks.

I asked my doctor and he said mid 30's, is this true?

Also, when will I start experiencing pain and etc...?

Thanks in advance fellow Thal patients 

To your question on life expectancy all I have to say is....
If we continue with our treatments and take care of ourselves by administering our desferal and all the bits & bobs the doctors tell us to do....
then we will have a long and fufilling life.
In New Zealand there aren't very many people like me who are Beta Thalassaemia Major and so it was common to hear your daughter won't survive to 7years, then it was 20 years and then 30.
I have now decided that no one can tell me when I will die and that I am going to enjoy life and be what I want to be. I met Professor Bowden two years ago and since talking to him, he has given me so much hope by telling me some of his patients are in their 60's.
I will one day be an old bag and around many years to annoy my husband (hehehe)
My advice is don't get hung up on life expectancy. Just enjoy life and be proud of being special just like us.

to the family cherieann!

Way to go Cherieann,  people like you are my hope for my daughter's future,welcome on the forum.

ZAINI.

   
 :welcometo the family cherieann! 
 

 
I just want to say thank you for your welcomes. I am very much embarrassed to haved stay away from the forum for so long. The last time I was logged on was around six years ago.
So may experiences since then but that's another story.
Now I am back, you'll probably get sick of me stories...(hehehe)
Wishing you all happiness as we handle the trials of life
Cherie Ann

How refreshing to see your post and your lovely attitude Cherieann!  Pleased to meet you   

Sharmin

thank you for your warm welcome.
I'm now cringing at my spelling. That's what happens when you get excited and your fingers can't type as fast as your thoughts.
I'm not sure how to move around this forum but I'll get the hang of it.
I'm still not use to having all this technology where I can communicate to other Thalassaemics.
I'm still in the clouds from my trip to Monash, Melbourne where I met 12 fellow patients. I would have been happy to just meet one. That was three years ago. Now I have come back to this website...
I don't think I will be coming down from the clouds.
Arohanui
(lots of love)

KIAORA:::: Cherieann...

Hello to all...I know I have been absent for some time from here..But I know that I wasnt missed much...

I just had a rough couple of months....

I hope that I can continue to post here more often than previously pending on health issues...

Take care all..

Smurfette,

Good to have you back, sorry to hear that you had a difficult time.  Is there anything you would like to share, or anything that we can help you with? 

Of course you were missed, I myself have noticed fewer posts by many of members so I just assumed everyone was getting busy with spring.  I'm so sorry to hear that you've had problems.  I certainly hope that you will post your concerns so that at the very least we can help comfort you. 

take care,
Sharmin

Smurfette,

I am sorry you had rough time,plz do share with us,sometimes you don mention someone,but you always have them in your mind and prayers .

ZAINI.

Hi Smurffette,

I'm sorry to hear that you're going through tough times. Wishing you all the best.

Please take care of yourself.

Hi Smurfette,

I've been patiently waiting for several months for an update. You had told me about two issues were facing and I haven't seen you around since, other than signs you'd been on Facebook. Do you come on MSN at all? I haven't seen you for some time and have wondered what the doctor told you about the back pain and also how you've been doing with your other treatment.