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.
Youa Yang and Pao Moua