My daughter, Dymon was having severe nosebleeds as a young child which started about the age of 3. She would wake up in the middle of the night with her covers saturated with blood. Can you imagine walking into your child’s room and it looks like a crime scene all due to an excessive uncontrollable nosebleed? Immediate panic and shock would take place. This would happen often and many times it resulted in ER visits, three of them by ambulance each time for her have nasal cauterizations, blood transfusions and hospital stays. The ENT, Dr. Castillo felt something else was going on with her and he wanted her to see a hematologist at St. Jude’s. Imagine this feeling being told your child needs to see the best doctors in the world which was a blessing but it was also a very scary moment as well. In June of 2010, she was diagnosed with a rare blood disorder, Glanzmanns Thrombasenthia at St. Jude’s Children Hospital in Memphis, Tennessee. Dymon was her doctor’s at St. Jude’s only patient with this disorder.
Let me tell you about Glanzmann thrombasthenia (GT), it is a rare inherited blood clotting (coagulation) disorder which basically means she has the right amount of platelets but they do not function.
It affects approximately 1 in one million individuals worldwide, This condition is inherited in an autosomal recessive pattern which means both parents have an autosomal recessive condition each carry one copy of the mutated gene, but they typically do not show signs and symptoms of the condition.
GT may be more common in certain groups, including those of Roman ethnicity, particularly people within the French Manouche community.