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Sai Chand. Gurujala
  • Male
  • Hyderabad, Telangana
  • India
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  • Zachary Strobeck
  • T. Wright
  • Sanja Kogelnik
  • Galia Ben Ishay

Sai Chand. Gurujala's Discussions

Exon Duplications of 2 to 4

Started Feb 10 0 Replies

I request you to please help us. My nephew is diagnosed with DMD in 2016.His age is 7.5 years.Hemizygous Duplication of Exons 2 - 4.MLPA probe ratio : 1.83 - 1.98CPK level - 12100I request you to…Continue

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Sai Chand. Gurujala's Page

Latest Activity

Zachary Strobeck left a comment for Sai Chand. Gurujala
"I'm take lisinopril and coreg to maintain my heart. I also use a sleep apnea machine when I sleep in order to maintain my respitory muscles. I also have an internal cardiac defibrillator (icd)."
Mar 11
Zachary Strobeck left a comment for Sai Chand. Gurujala
"I'm doing okay, I am in a wheelchair though, haha. I went into one around the time I was in 4th grade. I'm here to let everyone know that life still can be good in this situation even though it can be quite difficult."
Mar 9
Zachary Strobeck left a comment for Sai Chand. Gurujala
"Hey there! Sorry for the lat response, I don't know much about steroid treatment as I have not had any during the course of my disease so I don't know a lot about the side affects. It might be a good idea to do some research and weigh out…"
Mar 9
T. Wright left a comment for Sai Chand. Gurujala
"I looked up creatine in discussions.  I'm going to change the supplements that my son is taking.  If you read down the page-Maria shared what her son was taking.  L-glutamine, l caritine, grape seed, etc.  Im a believer…"
Mar 1
T. Wright left a comment for Sai Chand. Gurujala
"He is taking omega-3, calcium, Co q10, d3,-THESE 2X DAYmultivitamin.   I just started him on the nicotin amide riboside supplement.-500.-AFTER reading the posts on it.  He is taking deflazacort too.  He is still active.  The time…"
Feb 28
T. Wright left a comment for Sai Chand. Gurujala
"What is your nephew taking for supplenents?"
Feb 28
T. Wright left a comment for Sai Chand. Gurujala
"He is doing well.  We noticed he is falling more.  Tamoxifen sounds so promising.  I wish we could try what they are doing in Isreal.  How is your nephew?"
Feb 28
Sai Chand. Gurujala replied to Nimi Langer's discussion How much to give? in the group Idebenone
"Hi David, How is you son doing now. Hope he is doing well. Please share."
Feb 22
Sai Chand. Gurujala joined Nimi Langer's group
Thumbnail

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More
Feb 22
Sai Chand. Gurujala replied to shashi champaneria's discussion Astrology and MD
"Hi Shashi, My Nephew diagnosed with DMD in 2016 Duplications of exons 2 to 4 MLPA ratio : 1.83 - 1.93 CPK level: 12100 Pt Name: Abhinav goud DOB: 14-June-2009 Time: 10:45 AM Birth place - Hyderabad, India."
Feb 16
Sai Chand. Gurujala replied to Galia Ben Ishay's discussion Tamoxifen
"How is your son doing Sampreet. Hope he is not on wheelchair. So there won't be a complete cure for DMD?"
Feb 16
Sai Chand. Gurujala replied to Galia Ben Ishay's discussion Tamoxifen
"Hi All, EXONDYS 51 (eteplirsen) is approved by FDA in Sept'2016. I heard this medicine is not much effective for the treatment. Is this true? And does anybody know the price of it? Now, Ezutromid and Tamoxifen are on clinical trials. As DMD is…"
Feb 15
Sai Chand. Gurujala replied to Geraldine Coolidge's discussion Exon 44 Deletion
"Thank you Sanja"
Feb 13
Sai Chand. Gurujala replied to Geraldine Coolidge's discussion Exon 44 Deletion
"So this two therapies not for duplication exons? Even Ezutromid drug is not for duplication exons?"
Feb 13
Sai Chand. Gurujala commented on Holly Cahoon's group Dr. Kevin Flanigan - University Research Center, Utah
"Hello All, My nephew diagnosed with DMD in 2016. Duplications of exons 2 to 4 MLPA ratio- 1.83 - 1.98 Sir can anybody tell us when the treatment can be expected.. Doctors, Please save children"
Feb 11
Sai Chand. Gurujala joined Holly Cahoon's group
Thumbnail

Dr. Kevin Flanigan - University Research Center, Utah

For all of you who see Dr. Flanigan as well.
Feb 11

Profile Information

About me:
I am from India.
State - Telangana, Hyderabad
Phone# 9866723131
About my family:
My Nephew is diagnosed with DMD (Hemizygous Duplication)
3 (Exons 2 - 4).
MLPA Ratio : 1.83 - 1.98
CPK Level - 12100
Name(s) of child(ren)/individual(s) with Duchenne:
Abhinav Goud
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Hyderabad
State:
Telangana

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At 12:53pm on March 11, 2017, Zachary Strobeck said…
I'm take lisinopril and coreg to maintain my heart. I also use a sleep apnea machine when I sleep in order to maintain my respitory muscles. I also have an internal cardiac defibrillator (icd).
At 11:56am on March 9, 2017, Zachary Strobeck said…
I'm doing okay, I am in a wheelchair though, haha. I went into one around the time I was in 4th grade. I'm here to let everyone know that life still can be good in this situation even though it can be quite difficult.
At 11:29am on March 9, 2017, Zachary Strobeck said…
Hey there!
Sorry for the lat response, I don't know much about steroid treatment as I have not had any during the course of my disease so I don't know a lot about the side affects. It might be a good idea to do some research and weigh out the pros and cons for steroid therapy. I do know from experience that consistent physical therapy is important because it will maintain range of motion and help slow the process of phibrosis.
Also again, I'm sorry that I'm not familiar with that drug on trial and I don't know that it will completely cure dmd, it doesn't seem that medicine has arrived at a full cure but I can tell you that there have been huge breakthroughs and that diseases like this will be cured some day and it's quite possible that this could happen in your nephews lifetime.
Also something else that is of great importance is that your nephew should be seeing a cardiologist and a pulmonologist who have a background in treating patients with dmd as the heart and respiratory muscles are the very most important muscles and the treatment to maintain them will greatly extend your nephews life span. Men with dmd are now able to live well into their 40's because of all of the treatments that are available today. I hope this helps!
At 12:33am on March 1, 2017, T. Wright said…

I looked up creatine in discussions.  I'm going to change the supplements that my son is taking.  If you read down the page-Maria shared what her son was taking.  L-glutamine, l caritine, grape seed, etc.  Im a believer  natural supplenents.

At 11:34pm on February 28, 2017, T. Wright said…

He is taking omega-3, calcium, Co q10, d3,-THESE 2X DAYmultivitamin.   I just started him on the nicotin amide riboside supplement.-500.-AFTER reading the posts on it.  He is taking deflazacort too.  He is still active.  The time period is shorter and gets more fatigued than before. 

At 12:13am on February 28, 2017, T. Wright said…

What is your nephew taking for supplenents?

At 12:10am on February 28, 2017, T. Wright said…

He is doing well.  We noticed he is falling more.  Tamoxifen sounds so promising.  I wish we could try what they are doing in Isreal.  How is your nephew?

 
 
 

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