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cures, problems and growth problems

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Offline eesha

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cures, problems and growth problems
« on: September 20, 2007, 12:38:47 PM »
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.
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Offline §ãJ¡Ð ساجد

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Re: cures, problems and growth problems
« Reply #1 on: September 20, 2007, 03:16:22 PM »
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?
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Offline eesha

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Re: cures, problems and growth problems
« Reply #2 on: September 20, 2007, 04:40:04 PM »
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
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Offline Andy Battaglia

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Re: cures, problems and growth problems
« Reply #3 on: September 20, 2007, 05:03:59 PM »
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.
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Andy

All we are saying is give thals a chance.
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Kathy11

Re: cures, problems and growth problems
« Reply #4 on: September 20, 2007, 11:22:07 PM »
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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Offline Zaini

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Re: cures, problems and growth problems
« Reply #5 on: September 21, 2007, 11:30:42 AM »
Hi Eesha,

Welcome on the forum,i am sorry you are feeling so down,but i hope reading these beautiful posts by Sajid,Andy and Kathy will help you.these three are the best members of our forum,Sajid is our best cake presenter  :rotfl just wait for your b'day to come,he'll come forward with a wonderfull cake,Kathy's posts are always the humorous ones, :biggrin,i bet reading her posts raise my hb by atleast two points,and "Andy the great " is our GODFATHER  :wink,without him,this site will feel like a lost child,so all this humour apart,always remember,there are two approaches we can adopt towards life,one is
WHY ME  :shy
The other is
TRY ME  :evilplan

So, i know it's easy said then done,but try to be on the try me side,i know it's hard,i am not a major,only a minor,but when i experience chronic fatigue and terrible body pains almost all the times i sometimes ask why me  :dunno,but then it's the matter of being positive.
Quote
Life is short and life is never easy but we should all try to enjoy the great adventure.
I am sure you are a really wonderful and talented person and you are warmly welcome here to share with us .

TAKE CARE,

ZAINI.
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Kathy11

Re: cures, problems and growth problems
« Reply #6 on: September 21, 2007, 10:29:33 PM »
Hi Zaini.
Thanks for the compliment.You are a valuable member too, we are all a team and we are trying hard to achieve the same goal that is too give moral support and empower individual.
As I see it Andy is the father and the hard worker,kind and considerate.
Sajid intellingent. caring and the Pastry chef of the group. sometimes i drull over the cake :rotfl :rotfl :rotfl
I am the mad one. The joker I believe that a laugh a day is good for the moral.
This list is long I found this web-site to be the best all its member brings something  unique and special. we all are so priviledge to asscess this kind of commodoties on line.
I salute every single member of this forum. :grouphug :grouphug :grouphug :grouphug :grouphug
:urwelcome :urwelcome :urwelcome :urwelcome
Much Love
Kathy
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Offline Zaid

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Re: cures, problems and growth problems
« Reply #7 on: September 25, 2007, 11:48:57 AM »
Hi Eesha,

Dont feel bad about looking young.....I too have the very same problem, It was initially very hard for people to take me seriously but attitude is what makes all the difference. I'm in a sales job, i meet new people everyday...It's imperative that you establish an attitude of someone 5 years ahead of you...It'll work like a charm for you....Trust me.

Right now i'm 25 and you wont beleive how good it is looking a bit younger...Give a few years to it, you'll be thanking God you look young.
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Offline Canadian_Family

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Re: cures, problems and growth problems
« Reply #8 on: September 26, 2007, 10:27:48 PM »
Maturity is in mind and not in the looks. If you can convince people through talk then you are doing okay. I have seen 13 year old with enough maturity to beat a 22 year old. Act sober and people will realize.
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Offline nice friend

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Re: cures, problems and growth problems
« Reply #9 on: May 04, 2008, 12:54:04 AM »
HI all i know that i m too much late to reply on this topic its .. i m a new meber n i found this site recently a few weeks ago  ........... i cant stop my self to  sending a reply on this interesting topic .. bocze  several time my cousins who r younger than me said to me that ( umair bro grow up buddy ) ( here i want to explain 1thing that they r so caring  and they do some extra care of me ) ............  everytime i answer's to them like this ..
1 ) wat did you got  by growing fast?.
2 ) is ur younger cousins 11-15 let all of u play with them obviously NO but they dont stop me to play with them and i also play cricket in your team  HAHAHHAHHA .
3 ) YOU ARE GOOING TO OLD AGE BUDDY I AM QUITE YOUNG HAHAHHAH....
4 ) and u know that wat impersiion leave in some1's  mind when when i discuss something to him " HE IS MUCH MATURE THAN THEIR AGE FELLOW "  .

i enjoyed these kind of  comments abt me hahahhahahahhahaa
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
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Offline §ãJ¡Ð ساجد

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Re: cures, problems and growth problems
« Reply #10 on: May 04, 2008, 04:13:44 AM »
Good going Umair :)

Always B+ve
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Offline Sharmin

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Re: cures, problems and growth problems
« Reply #11 on: May 04, 2008, 06:07:59 AM »
Hi Eesha,

Welcome to our site - with very special members who get each other through the toughest of times - and celebrate the happy ones.
Zaini, I wanted to mention that you and Manal add a lot to this group - you are both caring, intelligent and accept everyone without judgement - your encouraging words are always available to anyone in need - lucky us:)  And Kathy - you are adorable :hugfriend 

Eesha, I can only imagine how you must feel, looking younger than you are.  As many others have mentioned, Sajid (if you see his lovely pictures in the gallery - looks young for his age) but we respect his maturity and his wisdom.  With your wonderful personality and courage - you can overcome this challenge.  Despite these challenges, remember all of your gifts and everything you are able to do. 

As Andy has said - take good care of yourself - your future is bright. 

Sharmin :)
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Sharmin
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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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Re: cures, problems and growth problems
« Reply #12 on: May 04, 2008, 06:46:46 AM »
Aww....Sharmin

Thanks! :blush
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Kathy11

Re: cures, problems and growth problems
« Reply #13 on: May 04, 2008, 08:19:44 AM »
Thank-you Sharmin. :hugfriend :hugfriend
 :flowers :flowers :flowers :flowers


One of these days i will post the comedy " Kathys visit with the doctors"  its hillarious :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Much love
Kathy
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Offline Zaini

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Re: cures, problems and growth problems
« Reply #14 on: May 04, 2008, 02:03:59 PM »
 :wub

Dear Sharmin,

Thanks for the compliments  :hugfriend your are a very caring and helpful person your self,and Kathy is always there to make us smile. :hugfriend

ZAINI.
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