When did my child develop this blood disorder?
Typically, these diseases are inherited at birth. In rare cases they can develop later in life if the body forms antibodies that fight against the blood's natural clotting factors.
How did my child develop this blood disorder?
Hemophilia types A and B are inherited diseases passed on to children from a gene located on the X chromosome. Females have two X chromosomes, while males have one X and one Y chromosome. A female carrier of hemophilia has the hemophilia gene on one of her X chromosomes. When a hemophilia carrier female is pregnant, there is a 50/50 chance that the hemophilia gene will be passed on. If the gene is passed on to a son, he will have the disease. If the gene is passed on to a daughter, she will be a carrier. If the father has hemophilia but the mother does not carry the hemophilia gene, then none of the sons will have hemophilia disease, but all of the daughters will be carriers.
In about one-third of the children with hemophilia, there is no family history of the disorder. It is believed that, in these cases, the disorder could be related to a new gene mutation. Tests are available to possible carriers to help determine whether or not they, in fact, carry the abnormal gene.
In von Willebrand disease, the genetics are more complicated. With von Willebrand disease, the missing protein, von Willebrand factor (vWF), is not on the X chromosome, but on a chromosome that is not gender determined; so, the disease can affect both males and females equally. Its inheritance is autosomal dominant, which means that a parent with the gene has a 50/50 chance to pass it on. In an autosomal dominant condition, if the gene is passed on to a child, the child will likely develop some symptoms.
Children with von Willebrand disease may have inherited the disorder or it is possible to have had the disease caused by certain medications, autoimmune disorders, kidney problems, and certain forms of cancer.
What does living with this blood disorder mean for my child?
It means the patient will face challenges, but there are plenty of steps to take to avoid problems and live a health, active lifestyle. It also means the patient needs to become their own best advocate—carrying medical information with them, learning about the condition, and avoiding certain medications and activities.
What are the complications of this blood disorder?
Without quality medical care, hemophiliacs may suffer from significant joint damage, neurological trauma, paralysis, learning issues and delays, and seizures with head trauma. Many of these complications may lead to being wheelchair bound.
Can a child with this blood disorder lead a normal life?
Hemophilia is a lifelong disease, but with the advances of specific clotting factors in laboratories, prevention, and treatment of bleeds is improving. With careful management, informed decisions, and recognition of complications, many children with hemophilia can live relatively healthy lives with a normal lifespan. Von Willebrand disease is the most common bleeding disorder in America, and with early diagnosis, patients with von Willebrand disease go on to live normal, active lives. Exercise is important for people with bleeding disorders, so consult with a physician for a list of physical activities appropriate for each bleeding condition.
What is the life expectancy for patients with this blood disorder?
The care for hemophilia is the best it’s ever been, and that leads to the possibility of patients living a long life. Historically, this was not the case, but those days are far behind us.
Why are medical costs so expensive for this blood disorder and how do I figure out what costs insurance covers?
The largest contributor to costs is the IV medication, which can run between $230,000-$300,000 per year. We understand the insurance issues that go along with this disorder and our team is dedicated to helping our patient’s family understand what the insurance can offer, what is out of pocket, and what is maximum on their policy ($1 million max is not a lot of money in hemophilia treatment over a lifetime). Co-pays can also be a burden, so we help find assistance programs and if needed.