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Hi

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Offline shy

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Hi
« on: October 21, 2008, 03:02:17 PM »
Hi,

I am new to this site and wanted to say that until recently this year i didn't know alot about thalassemia but it has affected me in a very sad way as i have lost children by it and i have my up and down days where i think its out of my hands and they are not suffering.  I get very angry sometimes and take out my frustration on others.

I am a carrier and only recently i found out which was hard for me to digest at first, cause my wife and I are both carriers makes it so hard to think we could have a child who could be OK even though the chances are 75% but feels like 25% as thal keeps creeping in.  I feel so much for people who suffer with this and it makes me cry to know that people suffer so much.  I am planning on trying to raise more awareness through facebook and i am planning on raising money for the thal society in the UK by doing some sort of bike ride.  Will be next year.  I want the funds to go towards finding a cure, research, equipment anything to help. I will do this in the honour of my kids who have been affected by this.  I hope one day there will be light at the end of the tunnel. 
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Offline Sharmin

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Re: Hi
« Reply #1 on: October 21, 2008, 03:07:54 PM »
Dear Shy,

I am so saddened to hear what you have been through, may the little angels rest in peace. 

I hope that it will help you to be on this site, please keep posting.  I am very interested to hear about your fundraising activities and would be happy to help you spread the word.  How can we access the page on facebook? 

All the best in what you plan to do,

best,

Sharmin
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Sharmin
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Offline Manal

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Re: Hi
« Reply #2 on: October 21, 2008, 03:43:24 PM »
Dear Shy

My heart really goes for you and your wife, i can understand your feelings, Your goal, is the same as ours and we would like to put our efforts togather to do whatever helps in reaching a cure. You ideas are great.
Please feel free to post whateveryou go through, we can share the pain togather and we will be here for you giving you all the support :hugfriend

manal
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Offline shy

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Re: Hi
« Reply #3 on: October 21, 2008, 04:24:58 PM »
Hi Manal and Sharmin,

Thankyou for taking the time to respond to my post and thankyou for your thoughts and kind words.  I will certainly let you know my plans for the activities i wish to do.

I wanted to do it this year but after all that has happened its been difficult but the ideas i have are to

1) contact leading large companies such as banks, big shot tycoons like Richard Branson
2) The lions club across UK who maybe able to assist with my bike ride
3) Try and get big sponserships
4) start training for the ride and plan out a route as to where i am going to cycle from and to where.
5) Also contact thal UK society and get some ideas

The only way i am speading the word on facebook is by contacting friends, family through my own network and trying to make people aware - It would be a good idea to get media involved somehow but not sure how to do it

Will keep you posted
 
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Offline Manal

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Re: Hi
« Reply #4 on: October 21, 2008, 04:31:26 PM »
MEDIA...this is the key word, if you reach the media, we can have funds for a cure.
Please check this link

http://www.thalassemiapatientsandfriends.com/index.php?topic=2194.0

manal
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Kathy11

Re: Hi
« Reply #5 on: October 21, 2008, 10:56:56 PM »
Dear Shy, :welcome :welcome :welcome :welcome
Welcome to this forum.


I'm Kathy and I suffer from thal and sickle cell .I have thal intermedia.everynow and then the fustrations become overwhelming I had to learnt how to cope with it.  I Learnt how, "to sit it out "when it happen.

I hope you make some friends to share your worries with and learn more  about this disorder in order for you to live as normal as you possibly can,It is manageable.
I am glad to read that you are going to fundraising for the cause and I wish you good luck.I hope in doing so, it will help you in releasing the anger that you mentioned in your post,
Remember acceptance brings peace of mind and in returned you can achieve happiness.
I wish you the best ,regardless there is always someone here to give moral support ,you are not alone.
Kathy.

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Offline maryo0m

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Re: Hi
« Reply #6 on: October 22, 2008, 12:05:24 AM »
Hi shy,

I am really sorry for your loss , Both of my parents are carriers too but I have Thal and my younger sister turned out totally healthy shes not even a carrier so dont give hope  :wink

and my prayers goes to you and your family welcome to the group  :biggrin
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Offline shy

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Re: Hi
« Reply #7 on: October 22, 2008, 09:29:19 AM »
Hi all,

Thankyou for all of you sharing your thoughts and kind words and it really helps that there are other people out there willing to help and support - I feel a lift of my shoulders and happy that there is all of you there for help and comfort.

We have to be strong and positive and believe in hope - I am pleased to be on board.

Thankyou all
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Offline maryo0m

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Re: Hi
« Reply #8 on: October 22, 2008, 10:19:24 PM »
Yap postivity is the KEY  :biggrin
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Offline poo gill

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Re: Hi
« Reply #9 on: October 23, 2008, 01:42:30 AM »
Hi Shy

I was touched to read your post.  You are in pain and are still willing to help others.

Sometimes I feel that God has put us thru this cos he wants us to do more for these kids and I beleive we are the chosen ones who can make the difference.

Thanks
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"We are like angels with just one wing. We can only fly by embracing each other." 
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Offline Lyanne

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Re: Hi
« Reply #10 on: October 23, 2008, 04:19:26 AM »




  Hi! shy. Welcome aboard...........  :welcomewagon  :welcomewagon

  You have come to the right place......  :hugfriend
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LYANNE :yahoo
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Offline nice friend

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Re: Hi
« Reply #11 on: October 23, 2008, 05:11:00 AM »
H shy :welcome ,
Welcome to thalpal buddy ,
hope you will feel lucky to be a member of this site as we are feeling lucky to have you here on this site ... keep posting and keep in-touch with us ..

Best Regards
Take care
Umair
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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 Zaini

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Re: Hi
« Reply #12 on: October 23, 2008, 10:08:45 AM »
Hi Shy,

I really appreciate your spirit and i am sorry for your loss,we need to spread awareness about thal,world needs to know about it.

Zaini.
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^*^Xaini^*^
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Offline shy

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Re: Hi
« Reply #13 on: October 23, 2008, 11:02:46 AM »
Hi Everyone,

Thankyou for all the comments and kind words.  You are all an inspiration to be so positive and willing to help others.  I feel better to know that there is this site and so many people on it.

I have already started to communicate the subject of thal to huge companies and hoping someone will come forward and help, i have wriiten to the BBC news and hope they may look into this and possibly help.  You have all made me feel very welcome and i feel i have made some new friends.  I want to help and with everyone who gets involved we will beat thal and make people better.



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Offline maryo0m

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Re: Hi
« Reply #14 on: October 25, 2008, 01:18:09 AM »
Hi shy ,

thnx alot for your effort we do appricate it , as we are all working on local awarness about thalassemia in our communities, we hope that BBC would co-oprate with you , this way it would be more public world wide,

thanks again go0d luck,

mariam

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