Daniel, Eliza & Luke
three children, Daniel 6 years, Eliza 2 years and
Luke 9 months, all have Glanzmann's. Although this
disorder is found in those who have married relatives
(consanguineous), my husband and I are not related
to each other as far as we know.We do share the same
Dutch ethnicity, however.
saga begins in 1996 when our oldest son Daniel was
born. After a normal labor and delivery, Daniel was
covered with bruises on his back and petechiae in
his groin. At the time, we were told it was from trauma
related to the birthing process.
his circumcision he oozed blood for about 4 hours. At his
2 month checkup, he had his immunizations. I took him home
and noticed that his pants were blood soaked. That incident
got us a referal to our hematologist who ordered blood work.
The results were disappointing, but it was a relief to finally
have a diagnosis.
has been hospitalized many times for nosebleeds, the
first one at 2 years. I didn't see any bleeding, but
noticed black, tarry stools. Platelet transfusions
have worked every time except once.
the occasional nosebleed, his gums bled when his teeth
came in. Many times blood goes down his throat and
thus, I don't know he is bleeding. Sometimes it is
very difficult to manage a nosebleed. We have had
nasal cauterization, packing, novo7, fobrin glue and
2 platelet transfusions for one episode.
bruising is mostly cosmetic. I have noticed that if
he bruises his joint that it is very painful for him.
He even refuses to walk if he has injured his knee
or ankle. X-rays have determined that thes were just
soft tissue injuries. Well-fitting shoes help keep
him from twisting his ankle. Additionally, recently
he has incurred his first GI bleed. This was also
resolved with platelet transfusion.
learned to asses him very carefully. His color and activity
level, also his odor as GI bleeds stink. I check his nose
and throat every day. We try to raise him as normally as
possible. He is a friendly, outgoing little boy and takes
all this bleeding quite well. At home I have Amicar and
neosynephrine on hand, to use as needed. He also takes iron
orally. Although the stress of living with a chronic condition
can be overwhelming, we've made it so far- and I am still
sane! Our other 2 children also are afflicted, but fortunately
don't have a big history yet!
was diagnosed with Glanzmann's thrombasthenia (GT)
at nine months. This is a rare blood disorder in which
the platelets do not function. The manifestations
in Daniel werebruising, nosebleeds, joint bleeds and
Daniel grew older, his nosebleeds and gastrointestinal
bleeds becaome so severe that he would go into hemorrhagic
shock-- even with platelet transfusions.. He spent
a lot of time in the hospital in different areas-
the ER, OR, ICU and the pediatric floor.
was referred for a bone marrow transplant at the University
of Michigan. His transplant date was January 25,2005. Pfizer
medicines were used in both conditioning and post transplant.
Now that Daniel is cured of his Glanzmann's and has survived
the transplant, he is a normal boy. He is able to attend
school and play in gym. He can vacation with his family.
the transplant, he would bleed for no apparent reason--so
he needed to be near a hospital at all times. It was a stressful,
difficult way to live for the whole family.
Daniel has required so much care during and after hospitilization,
his two younger siblings- who also have GT were frequently
left with grandparents. Our church community provided meals
and coworkers sent Daniel gifts during his hospitilization.
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