Discussion Forums > Thalassemia Major

Thal major - do's and dont's

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Vann:
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?

Vann:
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  :biggrin

jade:
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

cherieann:

--- Quote from: Vann on May 08, 2008, 10:23:39 AM ---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  :biggrin

--- End quote ---

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.

§ãJ¡Ð ساجد:
:agree :exactly

:welcome to the family cherieann!

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