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T. Wright
  • Male
  • Oak Island, NC
  • United States
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  • Zachary Strobeck
  • Sai Chand. Gurujala
 

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Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Mike
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Oak Island
State:
NC

Comment Wall (3 comments)

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At 12:49pm on March 11, 2017, Zachary Strobeck said…
Hello there, I'm sorry to hear about your sons diagnosis but it's good to know that there are a lot more options available to extend our lives. I'm doing pretty okay as far as the progression of the disease goes. Overall, I feel like I'm doing well, a lot of that has to do with the fact that I see a cardiologist and pulmonologist who understand dmd. It's super important to maintain the most important muscles. If you ever want to keep in touch you are welcome to email me at zstrobeck@gmail.com
At 4:11am on February 28, 2017, Sai Chand. Gurujala said…

Hi Wright,

He is 9 years. He is on deflazacort and Co Enzyme.

Walking well, Difficulty in using stairs and getting up on floor. No falls, very active.

Yes, Heard Tamoxifen is good but it is still in trails. It may come to market in 2019.

Does Tamoxifen cures completely?

What supplements your son is taking. Please share.

Thank you Wright.

At 10:15am on February 27, 2017, Sai Chand. Gurujala said…

Hi Wright,

How is your Son doing.

 
 
 

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