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

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, 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.

 Long back there was a comment from you on my wall whcih i saw yesterday so i responded. regards- rajiv

Sorry for abnormal delay. I am at kanpur now my son is10 and studying class IV. my no. 09839978611

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

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.

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.