Discussion Forums > Thalassemia Major

cures, problems and growth problems

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eesha:
Hi ia m a new member i have been reading all these blogs about cures i whought only bmt was cure nothing else. also can someone explain gene therapy and how it will work for thalassaemics and by when do u think it will likely to be used as a treatment.

Also,  have hormonal and growth problems due to my thalassaemia therefore i look very young. ia m 22 but only look 13, and this is very depressing for me trying to lead a normal life. at work people mistake me for asomeones child, i cant get top jobs because i look too young, people treat me like a child coz i look and sound like a child.  i want to know if anyone else has this problem. are there any treatment or cures for me to grow and look my age and to develop my voice.
i get so depresed about this sometimes i want to lock myself up and never get out.

i also have osteoperosis and coeliac disease, eye and hearing problems. does anyone else have this many problems. i dnt knw why i have them because i am very compliant with my treatment.

§ãJ¡Ð ساجد:
Hi Eesha,

:welcome to the site.

We have had some posts on gene therapy at:

http://www.thalassemiapatientsandfriends.com/index.php?topic=713.0
http://www.thalassemiapatientsandfriends.com/index.php?topic=1114.0
http://www.thalassemiapatientsandfriends.com/index.php?topic=1115.0

It basically involves a vector (like a virus) that can be introduced into a Thal. patient that can replace the genes with a correct one. Let's hope the clinical trials begin soon.

Now, what's wrong with looking younger than your real age? Scientists are spending millions for something like that :biggrin but seriously, jokes apart; I too look younger than my age, but I never let anyone get it over me. Try to be yourself, don't get depressed and take it positively.

These problems that you have listed are quite a lot and there can be different reasons for them. What do your doctors tell about them? What is your Serum Ferritin and what pre Tx Hb do you maintain?

eesha:
how long do u tink gene therapy will become a cure i am desperate.

docs say my probs are not due to iron overload but excessblood transfusions.

my ferritin is around 1100. thats coz im on exjade. wen i was on desferal it used to be 800/900

Andy Battaglia:
Hi eesha and welcome,

Both eye and hearing problems may be related to desferal usage so it will be a good change for you to be on exjade. If your ferritin doesn't lower using exjade, you may need a slightly higher dose. I don't think celiac disease is related to being thal. This is just a reminder that not all health problems that thals experience are related to thal. Are you taking anything for osteo? Calcium and vitamin D are absolutely necessary.

Gene therapy trials are only in the planning stage and if it works it is still years away. The best thing is to stay compliant with your treatment and to live as normal a life as you can.

Sajid also looks much younger than he is, as did Lisa, the founder of this group. Lisa had fun with it, so attitude is a big part of it. When you get to my age you will be happy when someone tells you that you look young. Dress and carry yourself as an adult and always be courteous but correct people when they think you are a child. Sajid may look young but you will find in this group he is a well respected member with knowledge beyond his years. No one would ever consider him to be a kid. Measure yourself by your own self worth and not by what others, who don't know you think. Those who come to know you will see who you really are and appreciate you for yourself.

Life is short and life is never easy but we should all try to enjoy the great adventure.

Kathy11:
WELCOME EEsha,
Being sick and having a chronic illness all your life its not easy, all of us here is aware of that feeling and its no picnic,

Still if, i was in your shoes i would change my thinking and look at all my achievements,
you are intellingent, and stronger than most, to be able to be with the best of them in the workplace +++++
be happy to be different, you are unique, and you need to celebrate, that there is no other one like you, that makes you a" special person."
you are the daughter of your mum and dad and you are just what you suppose to be.
Stop asking "why me" and try to accept what you cann't  change,
Dont compare yourself to no one,just do the best you can for yourself,despite of your illness you have lots of blessings ,
We are all so happy to befriend you and give you moral support ,
Be kind to yourself ,you are special.you need to arm yourself with the power within.
good luck and I wish all the strength to change you out look ,Live in the now and hope for a better future,.
Kathy

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