Nguyen Van Anh
  • Female
  • Ho Chi Minh
  • Vietnam
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  • Doan Nguyen Xuan
  • Preethi
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Nguyen Van Anh's Discussions

How to have healthy new baby when I am a carrier?

Started this discussion. Last reply by Nguyen Van Anh Jan 26, 2011. 6 Replies

We are intend to have new baby.But I'm wondering how have a healthy baby.1/ My husband want to have baby girl only, and I think about using "Pink or Blue DNA gender testing" to testthe gender of…Continue

Any development in curing exons 18-25 ?

Started this discussion. Last reply by Nguyen Van Anh Jan 12, 2011. 3 Replies

As i know the medicines AVI, PRO etc. can treat exons 45-52, so anybody here knows the how far this medicines can cure DMD ? or how successful of these medicines ?My son is defined with deletion of…Continue

CPK level of Duchenne can be around 5000 to 1000?

Started this discussion. Last reply by Ofelia Marin Dec 13, 2010. 10 Replies

Dear all,Sorry of my bad English, but I'm very exhausted of waiting the DNA test.My son have 4 times test of CPK, the result are very different, first time is 5328, second is only 76 (as normal…Continue

 

Nguyen Van Anh's Page

Profile Information

About me:
I'm an Vietnamese morther. I have a brother who died of Duchenne. But in Vietnam, we do not have any test before birth, so I coudn't test for DMP. And now, my baby son, just have PRC multiplex test with exons 18-25
About my family:
My family live in Ho Chi MInh city, we have only 1 son.
Name(s) of child(ren)/individual(s) with Duchenne:
Pham Hieu Anh Khoi
Age(s) of child(ren)/individual(s) with Duchenne:
0-3
City:
Ho Chi MInh

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At 7:04am on December 7, 2016, Benson Christopher said…

Hello baby
My Name is Christopher Benson,I was born on 15th of April 1975,My father was originated from United State of America,and I grew up in LA.I am the only son and child of my family,i am here to find a woman in my life hope is you..?please write me mail(christopher7benson@hotmail.com)i think i like you.
thanks
Christopher Benson.

At 2:28am on September 4, 2013, Doan Nguyen Xuan said…

Chào chị Vân Anh,

Em là Nguyễn Xuân Đoàn - 30t, em sống chung với loạn dưỡng cơ Duchenne đã 30 năm. Hiện tại em đang được giao nhiệm vụ xây dựng CLB DMD Việt Nam để kết nối các gia đình và trẻ DMD lại gần nhau, để cùng chung tay giúp đỡ, sẻ chia và nâng cao chất lượng cuộc sống. Hiện tại CLB đã có website tại địa chỉ: www.duchennevietnam.com và đã thành lập được Nhóm DMD Hà Nội, Nhóm DMD Bắc Giang. CLB cũng đang cố gắng để xúc tiến cho ra đời được Nhóm DMD Hồ Chí Minh.

Vì vậy em rất mong được kết nối cùng chị và mời chị cùng tham gia vào CLB.

Mọi chi tiết chị liên hệ với em qua email: clbdmdvietnam@gmail.com hoặc điện thoại 0976344808 hoặc chị có thể kết nối với chị Hồng Linh (Điều phối DMD Việt Nam tại Hồ Chí Minh) - 0908478646

Thân ái,

--

NGUYỄN XUÂN ĐOÀN
Chủ nhiệm CLB DMD Việt Nam
Địa chỉ: Xóm Chợ, xã Đại Mỗ, huyện Từ Liêm, Hà Nội
Điện thoại: 04-38390042 / 0976344808
Website: www.duchennevietnam.com
Email: clbdmdvietnam@gmail.com
Facebook: http://www.facebook.com/DuchenneVietNam
At 1:30am on May 1, 2011, David said…

I may have the deletion details wrong. Doesn't seem to matter at this point anyway, there is no activity whatsoever involving trials to skip rare exons. 6 years ago I would have thought by now we would be well beyond exon 51, but even that is still not complete.

I'm watching the ACE-031 trials, utrophin upgregulation and Sildenfil with more interest. Exon skipping is simply too slow to matter for my boy, who is nearly 13 now.

At 6:26am on April 26, 2011, Katerina said…

Hi, i' m katerina. But we have a deletion in 21 exon and need skipping of 20or 22 exon

At 4:48am on March 29, 2011, Trinh Nguyen said…

Van Anh oi,

Hom qua chi dt em ma ko duoc. Chi da lien lac Bs.Khanh, nhung co ay chua nhan duoc ho so be nha chi. Chi hoi lai FV thi ho noi ho da chuyen di nhung chua co ket qua. Ko biet ho goi cho ai.

Hom truoc chi cung co hoi Bs.Diep Tuan ve viec goi di Phap, nhung ho noi chi goi di Ha Noi thoi.

Be nha em thi sao. Be ko bi MD chu ?

C.Trinh 

At 11:16pm on March 22, 2011, Trinh Nguyen said…

Cam on Van Anh. Chi se lien he voi bs. Khanh.

Trinh

At 3:25am on March 22, 2011, Trinh Nguyen said…

Hi Van Anh,

Bs.Vinh/Nhi Dong 1 va Bs.Minh/DHYD. Chi vua cho be sang gap bs Diep Tuan o FV ; da lay mau mau de lam DNA test. FV goi ra Hanoi Van Anh a. 2 tuan nua moi co ket qua.

Nha chi o Q.Phu Nhuan.

Em co cho be tap VLTL o dau chua ?

Khoi co cap mat rat sang va dang yeu. Take care em nhe.

Trinh

At 11:23am on January 24, 2011, Wyatt's Mommy, Melissa said…
He is so cute.  Thank you for requesting me as a friend, if you need anything please don't hesitate to send me a message. 
At 12:02pm on January 18, 2011, David said…
I'm sorry you may have misunderstood my post. I don't know any Katerina. But my own son, Joe, requires skipping of 17/18.
 
 
 

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