"Hi Ambrish,
I am Rahul from Gurgaon and my 3 year old son has been diagnosed with DMD recently. Hope we can connect as we have lot of answered/unanswered questions.
Thanks.
Rahul"
-
Ambrish Kapadia
- 43, Male
- Mumbai Maharashtra
- India
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Latest Activity
Neetika left a comment for Ambrish Kapadia"Hello Ambrish,
Thanks for your note earlier today, I think we are are already connected to mdsociety.org, as my husband Vikas Sood has been interacting with Dr Alok since we met him at the AIIMS meeting earlier last year.
My Son is going to…"
Alina Popovici left a comment for Ambrish Kapadia"hy,Ambrish.I`m Alina,from Romania,i understand that your kid has deletion 52-54,i have my both children with the same deletion.if u want we can talk about this .take care and trust God.bye"
Ambrish Kapadia replied to Moein's discussion No Idebenone Online Anymore"Thanks Ofelia for the information .
Ambrish"
Ambrish Kapadia replied to Moein's discussion No Idebenone Online Anymore"Just forgot to mention , my son Khush at age 5.6 yrs is still not on any steroids
Ambrish"
Ambrish Kapadia replied to Moein's discussion No Idebenone Online Anymore"Hello Every one , I just got 4 bottles ( 150 capsules each ) of Idebenone last week from Kirkman .One of
the other parent whose son is recently diagonised with DMD wanted for his son , so I just checked for him and search results did not show any…"
JUAN PEDRO ARBULU left a comment for Ambrish Kapadia"Ambrish, i´m sorry i did not answer yesterday, I really see no difference yet at least there is none externally.
Now Juan is on Lisinopril and Eplerenone wich replaces spirolactone and is more accurate formula it´s a newer drug wich…"
Rajiv Pandey left a comment for Ambrish Kapadia" Long back there was a comment from you on my wall whcih i saw yesterday so i responded. regards- rajiv"
Rajiv Pandey left a comment for Ambrish Kapadia"Sorry for abnormal delay. I am at kanpur now my son is10 and studying class IV. my no. 09839978611"
Ambrish Kapadia replied to Andrew James Dixon's discussion DMD phenotype presenting as BMD phenotype"It's really strange to know exactly much qty of dystrophin is really required to keep our sons going well .
Have u guys undergone any tests to ascertain dystrophin % in the body .
This should give some clue to the researchers as how much…"
Ambrish Kapadia favorited Jason Darienzo's discussion Patient-Derived Stem Cells Into Mice With Muscular Dystrophy
wainaina muiruri left a comment for Ambrish Kapadia"Hi,Ambrish
Hope you are well with your family.Yeah i am in touch with Juan Pedro regardn Spironolactone and Lisinopril,and i hope to soon have access to the same for my son.My main prob is that i have been unable to get a chemist to sell to me…"
Jeferson Marques Machado left a comment for Ambrish Kapadia"Kapadia's Ambrish Hello, how are you? My name is Jefferson and thank you for add me here in PPMD. I'm 20, live in Brazil, was diagnosed with muscular dystrophy at age 9 and started using a wheelchair at 18. I wonder a bit about its history…"
Profile Information
- About me:
- Father of 6yr old DMD boy from India named Khush , He was diaoginised with DMD at 18 mts
- About my family:
- Me , my wife , and my parents and my only son staying together
- Name(s) of child(ren)/individual(s) with Duchenne:
- Khush
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City:
- Mumbai - Maharashtra
Comment Wall (11 comments)
- At 7:10am on November 13, 2013,
Rahul Singh said… - Hi Ambrish,
I am Rahul from Gurgaon and my 3 year old son has been diagnosed with DMD recently. Hope we can connect as we have lot of answered/unanswered questions.
Thanks.
Rahul
- At 9:31am on February 15, 2013, Neetika said…
Hello Ambrish,
Thanks for your note earlier today, I think we are are already connected to mdsociety.org, as my husband Vikas Sood has been interacting with Dr Alok since we met him at the AIIMS meeting earlier last year.
My Son is going to be 9 yrs old end April, is ambulating but has stopped climbing the stairs as of 3-4 months. We have him on Idebenone as of Aug12 and on Osmega capsules as of last couple of months. Hoping to slow down the progress of this debilitating disease.
Best Regards, Neetika
tashkoolboss@gmail.com
- At 1:07pm on February 7, 2013,
Alina Popovici said… hy,Ambrish.I`m Alina,from Romania,i understand that your kid has deletion 52-54,i have my both children with the same deletion.if u want we can talk about this .take care and trust God.bye
- At 8:12pm on November 12, 2012, JUAN PEDRO ARBULU said…
Ambrish, i´m sorry i did not answer yesterday, I really see no difference yet at least there is none externally.
Now Juan is on Lisinopril and Eplerenone wich replaces spirolactone and is more accurate formula it´s a newer drug wich interferes less or nothing with steroids.
How is your lovely son ( i saw him on your profile) doing?
JP.
- At 1:49am on November 8, 2012, Rajiv Pandey said…
Long back there was a comment from you on my wall whcih i saw yesterday so i responded. regards- rajiv
- At 6:56am on November 7, 2012, Rajiv Pandey said…
Sorry for abnormal delay. I am at kanpur now my son is10 and studying class IV. my no. 09839978611
- At 8:56am on December 6, 2011, wainaina muiruri said…
Hi,Ambrish
Hope you are well with your family.Yeah i am in touch with Juan Pedro regardn Spironolactone and Lisinopril,and i hope to soon have access to the same for my son.My main prob is that i have been unable to get a chemist to sell to me without a local prescription.But Juan is assisting on the issue.Thanks.
Regards
Wainaina
- At 2:13pm on November 12, 2011,
Jeferson Marques Machado said… Kapadia's Ambrish Hello, how are you? My name is Jefferson and thank you for add me here in PPMD. I'm 20, live in Brazil, was diagnosed with muscular dystrophy at age 9 and started using a wheelchair at 18. I wonder a bit about its history and how the situation in his country regarding the research. Good afternoon.
- At 5:24am on November 12, 2011, wainaina muiruri said…
Hi,Ambrish.
I am Wainaina Muiruri in Nairobi,kenya.My boy Kamau is DMD afflicted.I see you also have a problem getting ace inhibitors without prescriptions.I have tried for months to get them here without a prescription but to no avail.Pls share any info on parents using unprescribed ace inhibitors i present to doctors here and see if i will be any lucky.Thanks and nice weekend.Wainaina.
- At 11:25pm on September 12, 2011,
Joshua's mom said… Hi Ambrish,
My e-mail address is desender@live.com. Feel free to ask me any questions, or the DMD family here on PPMD.
Take care,
Naomi
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