wainaina muiruri
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wainaina muiruri's Discussions


Started this discussion. Last reply by wainaina muiruri Sep 10, 2015. 6 Replies

Kamau Wainaina.My son.My friend.Rest In Peace.Continue

FibroGen Receives FDA Clearance to Proceed With Clinical Study of FG-3019 in DMD

Started this discussion. Last reply by David Aug 3, 2015. 1 Reply

"FG-3019 shows a positive effect on fibrosis in clinical studies of DMD patients, and inhibits or reverses the build-up of fibrosis in their skeletal muscle":Quite a milestone,this one.From the look…Continue

Cough Assist Devices

Started this discussion. Last reply by Andrea Cleary Mar 24, 2015. 11 Replies

Hello Dear ParentsAre there cough assist devices that are not too costly?My son is now having problems clearing fluids from his lungs,and the models i find on the internet are going for thousands of…Continue

Eplerenone & spironolactone

Started this discussion. Last reply by wainaina muiruri Jan 29, 2015. 6 Replies

Hello Parents:Is there a significant difference between Eplerenone and Spironolactone in terms of any side effects?Thank you.Continue


wainaina muiruri's Page

Profile Information

About me:
I am happily married and a father of two.I am a businessman,running a small business in Nairobi,the capital city of Kenya in East Africa.In love with reading.
About my family:
We were blessed with identical male twins in 2003.The elder of the two passed away in 2005 in a botched surgical operation in a national hospital over here tat was meant to rectify a small defect on his reproductive organ,something they were calling hypaspadia .He was anaesthesised and suffered a cardiac arrest before he was even operated on.My remaining boy was diagnosed with DMD recently.And the pain is immense.
Name(s) of child(ren)/individual(s) with Duchenne:
Kamau Wainaina
Age(s) of child(ren)/individual(s) with Duchenne:

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At 11:54am on March 18, 2016, Cecilia grandson said…

Employment opportunity in Pan Pacific Hotel, The manager of Pan Pacific Hotel Canada, wants suitable personal in which our hotel needs men and women who can work and live in Pan Pacific hotels here in Canada . Our hotel will be responsible for the payment for his/her air ticket feeding and accommodations only, so if you are interest you can contact us directory at this below e-mail address link...with your C.V. EMAIL:employmentpanpacific@torontomail.com we look forward for your prompt reply. Thanks. From the Hotel manager. Mrs Cecilia Grandson.

At 10:45pm on November 10, 2012, Ambrish Kapadia said…
Hi Wainaina ,

Hope all going well at your end .it's a festival season for us here in India .Its our new year .

Do yo find any difference with Lisinopril and Spironolactone with your son .Still in Mumbai I could not find a doctor who would prescribe it for my son .


At 9:49am on July 31, 2012, Andrea Cleary said…

Hello Kind Sir,

I believe you have mistaken my family for another, as we will not be travelling to Africa, though we would love to some day. I have always found the people of Kenya to be so deeply proud and regal, and always with a beautiful smile or easy laugh not far under the surface.

I was thinking about your twins and the tragedy of your boy passing during that surgery. If the boys are identical, then he also had DMD, no? In which case it may have been the anesthesia that caused his cardiac arrest, which can be a problem for our DMD sons. Our Simon also had an operation for an undescended testicle when he was 3, before we had a Duchenne diagnosis, and therefor there was no warning about the type of anesthesia used. His DMD symptoms began to show more immediately after the operation, and I strongly believe it was the anesthetic that exacerbated everything, simply because none of us knew yet that some types are dangerous for our sons.

How is Kamau recovering from the stroke? Blessings to him and your family Wainaina Muiruri.

Andrea from Montreal, Canada

At 9:23pm on June 29, 2012, Andrea Cleary said…


How is your son doing? How are you parents doing?

I just read your "about me". I too was the victim of a medical error that nearly killed me, and I can only imagine the pain you must have endured that day and since. 

Wishing you all peace.


At 7:42am on May 8, 2012, danielle said…
Im sorry to hear that you are going through this. It is tough but our kids teach us how to be strong and how to care for them. They dont expect us to make it better they just want us to give them our best and love them.
At 2:22pm on November 12, 2011, Ambrish Kapadia said…
Dear Wainaina muiruri,
first of all very sorry to hear about your twin boy's untimely demise..
Abt ACE and ARB inhibitors -i hv asked Nimi to share with me names and contact details of those parents in US and canada who are using these drugs on their little ones before any heart problems have been diagonised for them.
Once i hv any news from Nimi Langer on ppmd blog i will let u know.
In the meantime u can check with juan pedro arbullu of Lima Peru..He too is member here and giving lisinopril and spironolactone to his 6.5 yr old dmd son under guidance of a pediatric cardiologist since last 3 to 4 months .U can search
him on the forum and discuss with him further.
All the best and hv gr8 weekend.
Rgs ambrish
At 3:47am on March 3, 2010, yohannes getahun bizuneh said…
i am in ethiopia.21 years old with dmd

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