Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: shy on October 21, 2008, 03:02:17 PM
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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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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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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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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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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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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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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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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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Yap postivity is the KEY :biggrin
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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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Hi! shy. Welcome aboard........... :welcomewagon :welcomewagon
You have come to the right place...... :hugfriend
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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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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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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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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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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
Yes, maybe you can contact the UK Thalassemia Foundation?
There is a thalassemia clinic in London and the foundation is also in Birmingham.
I met them last year and they really touched me.
I feel sorry for the lost of your children.
Good luck with your plan, and where on facebook can we find you?
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take a look at this
www.youtube.com
baby stops breathing while asleep
type that in its my son
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hii all .my name is sarah im 22 n im currently living in UK coz im married here ...n b4 dat i was in my Pakistan n i never knew that im a carrier until i was pregnent then my hubby got tested , he was also a carrier but it was too late for a cvs test .we left every thing on Allah but Allah wanted to test us n my son was born having thallassaemia major.he had his first transfusion at 6 months but now mashallah v have done his bone marrow transplant 3 months ago n alhumdolillah it turned out to be so well..his father was the donor his treatment is still going on...im so glad to c this website n im really happy that so much effort is going on for our asian community bcoz still we asian need so much awareness n information abt this dieseas .....n if ny one has lost their child may Allah give them courage n they can still make a big difference by creating awareness among oder ppl .thumbs up for u lot
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Hi Sarah and welcome,
Where was the bone marrow transplant done and who were the doctors? I have heard of the mother being the donor for BMT but never heard of the father as a donor. I would like to hear more.
Yes, we do give much attention to Asians here and the reason is because it has been much needed. We have members from all over the world, but the needs of Asians have been great and we do make a special focus on helping anyone who is not getting answers. The international thalassemia organization has had its past two thal conferences in Asian countries in attempts to highlight the needs of Asians, but their day to day efforts are somewhat lacking. We try to fill that void so that no one on earth ever has to feel alone in their struggles with thalassemia. One of the board members of TIF and CAF who is a former president of both organizations, was told at the recent Singapore conference by one of our members that I am the only one who has successfully bridged the gap between the East and the West in the world of thalassemia. This would not have been possible if the Asians had not embraced me right from the start. For me it has been very fulfilling to watch as the Asian countries come to grips with thalassemia and great strides are made. The changes in some countries like Pakistan have been immense is just the past 5 years. There is much still to do but it is very encouraging to see the progress being made to bring care to more people constantly. TIF may be dominated by western thinking but at our group, there are no boundaries. All are welcome and all will be helped in any way that we can.
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hii the BMT was done in England, i live in birmingham n the hospital is birmingham children hospital i must say it is really good.when reyyan was 8 months old sm blood was taken from me n my husband from that v found out that my husband is the full match.so it took us about a year to decide n then v left every thing on fate...so by grace of Allah my son reyyan did really well mashallah he is 2 years old now.
In UK der r so many organizations supporting the ppl hoo have thallassaemia ..but unfortunately i havent seen so much of this in our asian countries bcoz i didnt even heard taht this dieseas can be really serious b4 i came over here ..so much effort is needed to make ppl aware of this blood disorder.I am always ready to help in any kind of support.Its really amazing the way u lot r making difference in ppls life..
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It's amazing that the father was a perfect match. I am very happy for your family. We have some other members whose children have also had BMT and some members who have gone through it themselves. It's encouraging to hear the success stories and to see the success rates climbing. In spite of the cost, BMT is becoming a more attractive option. The long term health care costs of a thalassemic will greatly outweigh the cost of BMT and aftercare, so if the cost can be worked out, it should not be an influence on the decision to have a BMT. With success rates topping 90% in Italy, there is much reason to expect higher success rates around the world. While we wait for gene therapy trials to really get moving. BMT is becoming an option that more people should explore.
I look forward to hearing reports on your son as time passes.
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Sarah,
Welcome to the site. I am glad to hear about your son doing well after BMT. It is nice to hear success stories about BMT.
Sharmin :hugfriend
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Hi Sarah and welcome to the site :welcomewagon
Are you and your husband related??? Could this be the reason for a full match?
manal
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hello! welcome to the forum/family..... Glad to hear your son is doing well.... hope you always update us with your son's development...... :hugfriend :welcomewagon :welcomewagon :welcomewagon
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Hi Sarah ,
Welcome to the Community , . its Nice to hear about your Son's sucessful BMT .. its a super news for all thals about another successful BMT .. thanx for sharing this with us ... it seems like a ray of hope for many other thals .. I look forward to hearing reports on your son as time passes.
Mee too and i hope all forum members as well ....
Best Regards
Take Care
Umair
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Hi Sarah,
Welcome on the forum,I am really happy for little Rayyan,lots of hugs and kisses for him.
Manal,
I am sure they must be related,as cousin marriages are so common in Pakistan.
Zaini.
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ye sme n my husband r related but he is my second cusin as in my mums cousin not mine....n im related to hum from my mums side....
my son is doing quite well mashallah.His T cells r bit low so they r still giving him infection control medicine called vigam. first it was every week but now it is every oder week..Doctor says that his graph is going on well n up n down is very normal.n in UK the NHS pays for the BMT so it didnt cost us a single penny to have his BMT done all was from the GOVT n they did really well.
I think it is very necessary to create awareness among ppl bcoz it is still an alien concept to many.
i must say that im so delighted to c this website n this forum is sooo amazing
hats off
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Welcome to the group, and I am glad your're son had a succesful bmt.
Btw I met people of the Thal organisation from Birmingham last year. Great people :D
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Update on my progress.
Since speaking out about thal and wanting to help others with it - so far i haven't had much luck with the responses so far. But this weekend i am in talks with other people to possibly organise a dinner n dance function and all money raised will go to the thal society uk in southgate.
I am going to talk to the hospital and see if they are willing to do blood tests for people who want their blood taken. Plus going to get lots of info about it and spread the word. Lets see how it goes and we'll see what happens - will update on Monday .
Speak Soon
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Hi PearTree Girl,
Thankyou for your words and hopefully i can help make a difference - I have been in touch with uk thal society in Southgate and all very nice people -
I am going to contact BBC until i get some sort of response
Will let you know my progress on Monday
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Good Luck Shy :goodluck
Zaini.
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yeah more awareness is needed ..n i must add that for BMT more donors r needed esspecially in our asian community ..i dnt know wt is the reason y v asians r so scared to donate our bone marrow n dis is the reason y children having thallassaemia suffer all their life ...life n death is in God hand but being a human being v r here with sm responsibility .....here in England mostly hoo have thallassaemia have their BMT done by their relatives n if they r not lucky enuf they have to zhave bloof transfusions like forever...so much effort is needed to encourage ppl abt BMT n the donation so that more lifes can be saved from this life time illness...
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Hi Shy,
It is admirable how you are trying to do something to assist thal sufferers.I commend you for you tenacity.
Having said that I would like to point out that we already have thal sufferers dying, due to the lack of facilities Eg: drugs , needles .blood, ect,ect,
Would it be better for us all, if we can give support to those already existing recipients instead of giving fund to large coporations .
Why not? enhance the life of the living instead of giving money to all the fat cats.
Money given to all ready rich scientist get lost in translations, I personally think, it doesnt assist thal directly.
Indirectly maybe in years to come.
Why not help in any way we can, to fix the immediate social problem that thal sufferers is facing now.
The above is my personal view I might be wrong ,still I would give to individual in needs, it make better sense to me.
Like Andy he sometimes assist thal patients on personal basis as per thier needs I think he need the support in order to continue giving this type assistance.
W
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hey Zaini.
If I try hard enough I can be serious :wink :wink'
Thank-you very much I pride myself of being a clown :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Kathy
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Yeeeeaaaahhhh Kathy :clapcheerboy :clapcheerboy
Good to have you back - the wisdom and the clown - we love it all!
I agree, I think that along with the larger organizations it is important to take care of those who don't have access to the essentials in thalassemia. Andy does some great things for these people so please consider sending needles, exjade, desferal, funds to thalpal so that Andy can continue to help the people who need it most.
Sharmin
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Good luck Shy :goodluck :goodluck :goodluck
Me too i have to finish the email i am assigned to do but for certain personal reasons i am late for this but i will definetly soon
manal
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Hi Kathy, i completely agree with you...
Infact, i think what Manal and everyone is try to do by getting people like Bill Gates, Oprah to become aware of thalassemia and donate funds to research makes more sense...
My personal opinion is if we want funds to be donated to research and scientitists, do everything we can to get someone like that to donate it for thalassemia research.. but with the money we raise ourselves, i too think its better to give to thals in need to make thier lives more bearable, give them better care and provide means to a better quality of life..
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Hi ALL,
So far i have written to the BBC again for a response and will keep writing to them until i hear something.
I have also written a letter today to two out of five dragons from the show dragons den.
Theo Pathitis and James Caan, seeing that they are both of aisn & maybe greek background, they might be able to help or atleast help and respond. Also in the process of maybe early next year to do a dinner and dance function to raise funds and get NHS involved for people to have their blood tested to get people aware of this problem. Keep you posted
Shy
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Good Luck Shy :goodluck
Zaini.
thankyou - will keep you posted - keep reading
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hii im sure inshallah BBC will give u a good responce.ur intention is wat all that matters to be honest ...i wish u all the best n please dnt hesitate for any help or support.
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Hi All,
Recent update - i am meeting a contact tomorrow about all this and getting some good feedback.
We will be advertising in the newspaper and hopefully getting this on TV - hopefully through BBC
Will update after tomorrow
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That is great to hear Shy! Wow, you have accomplished a lot!
Sharmin
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:thumbs :thumbs
Zaini.
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:goodluck :goodluck :goodluck :goodluck :goodluck
:goodluck WAY TO GO SHY !! :goodluck
:thumbsup :goodluck :thumbsup :goodluck :thumbsup :goodluck :thumbsup
BEST REGARDS
TAKE CARE
Umair
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We all support you Shy, keep it up & best of luck
manal
:goodluck :goodluck :goodluck :goodluck