Youa Yang

Hello my name is Youa Yang,

My native is Hmong I came from thailand southeast of asia. Right now we lived in Minneasota. I'm 27 years old and my husband he is 33 years old. We have 8 childrens, out of all 8. We have 2 childrens that have glanzmanns disorder. I have 2 daughters and 6 sons. My children's age range is 12 years old to a 2 months old baby boy. Kalia is 8 yrs old now and Xue is 4 yrs old. They both were diagnosed with this disorder at age 2 . This is when my nightmare begin.

They both have bruised all over their skins and red spot that moved around their entire body including their face and ears. Their skin is yellowish and pale. People would comment and stared at them when I take them out. I felt like I was abusing my own childrens. It's difficult to tell people and explain what their condition is like. The bleeding is always coming from their nose and later it will drips blood to the back of their throats. That can cause them to throw up with blood. Sometimes I can control the bleeding with Amicar and herbs that my culture used. But most of the time that doesn't seem work and we have to take them to Children's Hospital where they will get platelets, amicar, novo 7 and blood transfusion. Besides all of that if it still doesn't work then they will have their nose packed with dissolved packing which is done in the operating room.

I would be in the hospital for weeks to even months and I won't be able to see or take care of my other childrens. I'm a stay home mom and my husband worked two jobs in order to take care of us. When you have childrens that are very ill and have to maintain two jobs to keep up with your finacial difficulties. All I can say is that I'm very proud of my husband and I wish I could do something to help him.

Kalia is older now and her blood seems to be alittle better than Xue. But once in a while she does have a nose bleed. Right now her main problem is bleeding from her gums evernight. The next morning she would wake up with dry blood around her face and blood all over her long hair. She shared her bedroom with her other siblings and when they see her like this they get scared. So I would wake her up everymorning before the other get up and see her like this. She would take a bath everymorning before she go to school and she is very pale and tired in the morning. With a little scratch on her face or a dry lips can cause her to bleed all day. I watch them like a mother hawk who sits on her eggs all day.

Screaming , yelling, Jumping and running around the house can cause them to bleed. Even when the weather changed or being outside in the sun too long also cause this problems. Ice cream, ice chips to coke anything that have caffeine will start their bleeding. There gums are very soft and by eating chips that makes their gums bleed. So I'm afraid to take them to the dentist even to clean their teeth. Losing a tooth for kalia she would bleeds for a couple of days. For Xue he has teeth that just chipped away.

Their growth and abilities to do things are different from my other childrens. They both wet their bed everynight if they don't wear diaper. They get very emotional and short tamper. I would have to give them anything they little heart desire or they can cry all day or even get mad at me for a long period of time. They don't have the strenghth of a child there own age would. All I can say is that they are not as normal as a child can be.

Beside our family my husband's brother he also have 2 daughters with this disorder. On my mother side she has an older brother his -daughter and son-law also have a daughter in Thailand who is about Kalia's age that has this too. The doctor told us that this is genetics and that's why we have childrens that have this. Even in the next generation our grandchildren could inherited this disorder. So far with my research I don't know if there's any other asian families out there who have this problems. I would like know and talk to other families what are their ideas and how to take care of these childrens.

Thank You
Youa Yang and Pao Moua

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