Hi, I am new here. I am a ALD carrier from Hanoi Viet Nam. My brother died by ALD in 2002 at 11 and I have a male cousin died by ALD also from my mother's family. My mom is a carrier, too as shown in Genetic test result. We have a mutation in Exsom 8 perisomal chromosome ABCD1. Watching my brother getting worse was my too bad and hurtful memory. I talked with Sarah and got inspriation.
My concern is, how to raise more and more awareness about ALD in Asia, Vietnam respectly to let people know more about it. How a newborn screening help a ALD baby? I have a daughter who is healthy but what will happen to my next baby. I don't want an abortion but what should I do?
I never forget the last moment with my brother before going abroad. He held me closely, so closely. Then he gone before I came back. So sad.
My counsin had been living in vegetative state in 24 years. He died at age 34. So sad. Maybe I am a lucky one because I am a girl.
I don't blame my mom for giving me life. Nothing to blame. She is so brave to raise me. And as ALD carriers, we should be stronger 10x times. All ALD mothers are higglt respected.
For ALD health care in Vietnam: we have very little information about this kind of illness here so the patient may be misdiagnosed or mistreated and along with the development of syptoms, things became too late and the patient dies.
my contact is firstname.lastname@example.org. If someone is Vietname and was/are in the same case like me, do not hesitate to contact. I am willing to listen and hope we together could bring a solution for ALD carriers in Asia.