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55171 Posts in 5880 Topics by 6167 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Sadelain's Research  (Read 6154 times)
namitha
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« on: September 17, 2006, 07:15:19 AM »

Hi all,

I just found a link on MSKCC giving some updates about a possible gene therapy.

Enclosing the link here: http://www.mskcc.org/mskcc/html/63152.cfm

I hope something comes soooooooooooooooooooooooooooooon! Keeping my fingers crossed.

Regards,
Namitha
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« Reply #1 on: September 18, 2006, 11:32:47 PM »

Hi Namitha,

I have had the oppurtunity to speak to Dr. Sadelain in the hopes of getting the trial started in India first. As you might be aware even guinea pigs are being outsourced to India nowadays 

I also met Dr. Sadelain in Dubai and he really is a wonderfull person, I really believe he will be sucessfull in his research and will definetly bring this cure to us thalassaemics. Unfortunately his research needs funding for the trial and thalassaemia is not a very big disease in the US and right now cancer gets all funds right now.

I tried my best to tie up his research with Reliance Life Sciences in Mumbai, however I was unsucessfull, I beleive in "try try agin tilll your successfull" so I am back on this case and maybe might have some good news in the next 2 months.
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namitha
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« Reply #2 on: October 14, 2006, 10:18:17 AM »

Hi Ashish,

I've  heard a lot about you and read about you on various forums. I am so glad you are doing something to keep things going for us. I think Dr. Sadelain had come to Mumbai sometime. Please please do something and get me good news. I am a bad patient though I have thal inter. Very non-compliant  . Let me know if I can do something. BTW I too had a fracture and a screw implant surgery and now I am back to normal. Hope you are feeling better now. What exactly happened if I may ask?

Take care and 

Regards,
Namitha
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« Reply #3 on: October 14, 2006, 11:14:04 AM »

Hi Namitha,

He had explained what happened in this post

http://www.thalassemiapatientsandfriends.com/index.php?topic=332.msg2869#msg2869

Take care, Peace!
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namitha
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« Reply #4 on: October 18, 2006, 07:22:19 AM »

Hi Ashish,

I just read what happened to you. I just thought you had a fracture!! God, You are really brave. Join the club of those who broke their femurs. I had a hairline crack at the neck of femur. I had a CRIF with three titanium screws. I have recoverd and back to normal. How is your recovery and rehab? Hope you will have some physio to make that femur strong. Are you on any bone strength medications besides the usual calcium stuff?

Glad to note that you have a fine sense of humour 

Take care.

Namitha

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« Reply #5 on: October 31, 2006, 11:09:22 PM »

Yeah Special tablets to reduce bone turnover very strong medicine (GEMFOS) not to be taken lightly its really strong you are supposed take it on empty stomach and you have to be in a sitting position because it causes nausea and vomitting.

In regards to the fracture let me remind you there were 4 seperate pieces and a plate 4 screws and 3 wires were put in, the scar runs the entire length of my left thigh and I am of average height so its pretty big.

There were other complications that I am not willing to share at this point in time. I am currently on physiotherapy however there is some muscle loss because the first doctor I went to did not operate on me for 6 days, after which I was moved to Bombay Hospital and the surgery was scheduled.
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