There are two types of Hemophilia, type A and B. They have similar indicators and symptoms, but they are caused by two different gene mutations. One difference is that Hemophilia B mostly tapers off after puberty, with excessive bleeding mostly during childhood.
How do you know?
- Continuous bleeding from injury for long periods of time (Hours, days, etc.)
- Bruises that last longer than usual and continuously spread
- Spontaneous bleeding with no injury
- Excessive nosebleeds
How do you get it?
How do they test for it?
- The most common is having the baby tested after birth. Doctors will complete a screening test on the baby which checks the blood to see if it is clotting correctly. If it is not, they will do a clotting factor test. This is used to diagnose the blood disorder, for example, the type and severity of the Hemophilia. If a baby is found to have Hemophilia, these tests will allow for an effective treatment plan to be created.
- Not as common but still effective is testing the baby before it's birth, as early as 12 weeks into the pregnancy. This is done by removing a piece of the placenta from the mother and testing it using the same tests above, as the placenta has the same genetic information as the baby.
- A carrier test is a test performed on women usually before they get pregnant. It tests to see if the woman is a carrier of the Hemophilia gene before they have a child. This test is usually given once the woman is old enough to make their own informed decision about it. They are tested the same way as the others, through a screening test and a clotting factor test.
The Issues With Testing...
So what do I do about it?
- Mild-5-30% of normal protein level
- Moderate-1-5% of normal protein level
- Severe-Less then 1% of normal protein level
There is no cure, yet the treatment for Hemophilia is fairly easy and painless. Depending on the type, doctors will give patient more of the protein that they are lacking. This is entered into the body by being mixed with fluid and deposited through an IV.
My Child has it....I need help!
- Probably the most important for the child and for the parents is that your family has a good relationship with the doctor who will be treating your child. This will insure that you will be able to talk to them about any questions regarding the disorder or your child's health
- There are also multiple resources for parents who need them, one being an HTC or Hemophilia Treatment Center. Most of these centers also have a social worker there to talk to and work with parents.
- There are lots of Parent Support Groups that an be found on the internet and social media pages where parents gather to talk and support each other.
- There are also non-profit organizations that can provide local face-to-face help as well as some social events in order to bring people together. This link will bring you to a site where you can find an organization near you: http://www.hemophiliafed.org/about-hfa/member-organizations/