Video's related to thalassemia

Here are few video's which I viewed related to thalassemia, which shed light on What is thalassemia.

http://www.youtube.com/watch?v=Zp43iQOOiHg

Foundations who are trying to make a different are trying to get more AWARENESS related to thalassemia by showing some star power by showing Parthiv Patel (Indian Cricketer) and Amitabh Bachhan in the video below.

http://www.youtube.com/watch?v=gQgrTOViN5k&NR=1

http://www.youtube.com/watch?v=bAABYEk_TCs&NR=1

Great sharing Buddy!

It's nice to see several Thal. Videos popping up on YouTube now. I remember about an year or so ago; I only found 2 Thal. related videos there which didn't explain much and were not useful to spread awareness.

Seeing these videos proves that it is a good sign that awareness about Thal is going to get more coverage. I urge that we spread these videos more than crappy jokes that we send everyday.

Found this,it broke my heart.

http://www.youtube.com/watch?v=RyfXVATWvf0

ZAINI.

@Narendra the videos you posted was very toching thanks for sharing...

@zaini i saw that video and got very sad after watching it... cannot tell how i feel:(

Narendra,

Those links came at the right time for me. In my personal life, there are no thals and it tends to distance me to some extent. These videos bring it all home to me. I have been struggling with a decision about going to Singapore and there are around 4001 reasons that make it very difficult to commit to going. The first 4000 are dollars, as it will cost me at least that much to go. The 1 is a worker that I don't know will still be available in October and that is a long stupid story involving a greatly unneeded medical procedure that a con artist (or arrogant doctor...take your choice. But being a top expert in your field does not mean that you won't also be arrogant and greedy.) is trying to talk this worker into undergoing.

Watching some of these videos has reminded me in such a strong way that thals do need help and what I can provide by continuing to learn and try my hardest to help, is really the most important thing. If I have been chosen to do what I do, then I need to accept that and do all I can to do my best. I will do everything I can to make going to Singapore a reality. I cannot promise I can go but I have to try. If the worker situation becomes clearer I will somehow find the funds to go.

Zaini,

It was one of the videos that I was talking about but didn't put the link as it is too depressing and it doesn't tell anything about Thal.

The other video was posted on this site; which was a song in some Far-Eastern language with the singer visiting the Thal. Center.

Buddy,
You are already doing a great job for Thal. As much as everyone would like to see you in Singapore; your own personal life is most important too. Please don't let this trip effect your personal life and your family too. Conferences pop up every year and we can get all the knowledge from the net. I hope there is something in this conference worth visiting like a cure or something that makes you go WOW! I don't want it to be another hangout for the doctors and TIF affiliates and "The same old thing" for the rest of us.

I know it would be great to meet everyone and to see the whole thing in person "IF and only IF" you can; but please don't let it effect your and your family's life.

I agree with Sajid

manal

i agree with sajid too

HI ;
these videos r realy heart touching ... these videos makes me sad its realy feel bad whenu hear that someone who was sufferinng to same diseas u r suffering too has died  ..... its realy hard  to take ur self out of depressing news like  these  .......... 

Some of these videos are very sad but also very touching. One of the videos on YouTube about thal is called Cooley's Anemia (I am sure Danielle knows most of these people in this vid) and features Lisa's friend, Donna Faiella, talking about her hopes and dreams for life. On the MSN site is a picture Lisa posted of her and Donna and Maria Rizzo. Lisa's captions says "Wow, this was awhile back. We had a great time!!! I miss Donna Faiella sooooo much, she passed away in 1994, she was a huge yankees fan like myself and we had so much fun together. That's my friend Maria Rizzo in the middle, she's so fun to be with. I had a great time as you might be able to tell with that big ol' grin on my face "  http://groups.msn.com/ThalassemiaPatientsandFriends/thalpatientsalbum.msnw?action=ShowPhoto&PhotoID=31

The Cooley's Anemia video and another called "I Want to Feel It All" made me feel very sad but also touched me deeply. Although these videos are sad, they are also very powerful messages that are very effective in getting people's attention. There is a purpose to these videos in addition to paying tribute to thals. The message about the need for awareness and prevention is strong, as are the needs for better treatment and a cure. Thalassemia is the most prevalent genetic disorder on earth, yet it is virtually unknown throughout most of the world. Two million people in the US are carriers (minors) and most are not aware of this, nor the potential they have of producing thal majors if they have children with another carrier. I think the whole world should see these videos. There is probably no better "marketing" tool for thalassemia awareness and the need for a concentrated effort on prevention and treatment than these heart-wrenching videos. Education, awareness and testing can reduce the amount of new cases tremendously, as has been done in places like Cyprus, Australia and Hong Kong but so much more needs to be done and the guerrilla marketing tactics of using free services like YouTube to spread the message should not be underestimated. The value of powerful, emotional videos is immense.

I know it can be hard for many people to watch these videos and if it's too much, don't watch them. Speaking as a non thal, nothing has as much impact as seeing the faces like you do in a video, and realizing that thals are people just like everyone else and dammit, why aren't we doing a better job with this? Personally, I find a great deal of inspiration from the videos and watching these particular vids is what made me feel it is so important to go to Singapore and see everyone. Some of the people in the Cooley's video are people I met at the Dubai conference and they are going to Singapore. It's definitely an uphill climb for me to get there, but for me, meeting everyone is what really keeps me involved. Besides, I really do want to find out if Aston Dialo can drive me crazy within an hour as he promised. 

Here is another article which shows that Awareness can make a difference and people like Sarita Vohra are trying their best to portray it to the general masses

From:- http://www.expressindia.com/latest-news/The-comic-business-of-life/346858

Sarita Vohra uses comedy to explore issues such as thalassemia, multiple sclerosis and ageing

The curtain falls and the lights come on. Backstage, surrounded by the props, theatre director Sarita Vohra holds her breath. Has her experiment paid off? A heartbeat later, the audience rises as one and bursts into a loud ovation. Vohra has got her answer. She returns to the stage with the cast to take a bow.

“The audience has just watched a play on thalassemia and they’re grinning,” she says, smiling. Her forte is comedy and, for the last few years, her comedies have dealt with issues distinctly “un-comic”—street children, thalassemia, multiple sclerosis and ageing. And every time, she has succeeded in getting packed houses wipe away tears of laughter.

“Why can’t a thalassemic child be happy? Why can’t a multiple sclerosis patient still be his wife’s greatest love? And why can’t ageing be cheerful? These are the questions I ask myself when I work on a play. These issues may be serious, but they aren’t about never-ending gloom,” says Vohra, whose group Living Room Theatre began 20 years ago.

Her buzzword is “fun,” and it begins with the name of the plays.

The two plays on old age, for instance, are called 75...Not Out and Mallaika Sherraffat@oldagehome.com while the one on multiple sclerosis is called Mandy weds Sandy...Aur Phir.

She adds oodles of witty one-liners and Bollywood chartbusters. “There are lots of songs and dances and of course, images of the great Indian family, nosy neighbours and forbidden love,” she says.

Vohra has always been sensitive to the pain of others but she became more conscious of the hardships around her after her husband passed away a few years ago. She turned her back to the stage after his death, but friends forced her back. On the long road back to theatre, she realised that if there was a solution to sorrow, “it lay in positive thinking. And my theatre became a medium to spread that message,” says Vohra.

In the case of Mr and Mrs Nayyar about thalassemic children, Vohra hit on a foolproof plan to spread hope—she begins and ends with weddings. “I also made the thalassemic child a brat because he is pampered by everybody in the family. He is cheerful, a good dancer and grows up to be an engineer,” she says. In between the comic repartees, however, Vohra packs in messages like how thalassaemic minor parents should take the CVS test to determine if the foetus is a major. “Under such circumstances doctors generally advise aborting the foetus. India has more than one lakh thalassemics, most of them in border states like Punjab, Bengal and Gujarat,” she says. Adds Poonam Bhalla, a former faculty of Lady Shri Ram College and a long-time part of Vohra’s troupe: “The challenge lies is portraying the parts so that the humour does not suppress the serious message and vice versa.”

Purists dismiss her plays but Vohra maintains that “theatre can work wonders where therapy often blunders”. Helping her is a strong cast, ranging from prominent names of the city’s theatre circuit—Swadesh Mahan, Shashi Sharma and Kavita Sharma-to newcomers like Smriti Kalra. Others like Sarwjeet Jha, a company director off-stage, learnt the nitty-gritty of acting during past performances and will be a part of Vohra’s new production, a play called Urban Tarka, that deals with drunken driving.

And, as usual, it’ll be a laugh riot