Hemophilia Today

Children and Hemophilia Today

The Numbers
National Hemlphilia FoundatationIf your child has been diagnosed with it, then you all ready know that it's a lifelong disease. Every year around 400 children are born with hemophilia, and around there are an estimated 18,000 people living with this in United States. Two main types of it identified to date are called A and B. Around 80 percent of the people who have it suffer from type A. This is a bleeding ailment caused due to the inability of blood to form a clot. It appears to be hereditary and is normally found at birth and mostly occurs in boys. Generally, blood cells and other substances work together to form a clot and stop the bleeding. These consist of platelet counts, 13 clotting factors, fibrinogen and vitamin K.
 
Hemophilia is a chromosome disorder and affects mainly chromosome X. The gender of your baby is always determined by your XY factor.  Males have a pair of X & Y and females have a pair of X & X chromosomes.

In case of hemophilia, there will be an impaired gene on the X. Genes contain information that tells your body what action to take. Chromosomes are the container in the body, which packs the genes in it. Parents transfer the impaired X gene to the baby. This usually has affected many generations and the entire family knows of the bleeding disorder. For a very few families, the impaired X gene is a new change that they did not get from their parents. This is called "spontaneous gene mutation"
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Detecting Hemophilia in Kids
The physician may question you about the history of your child’s health. He/she may want to know all the details of their bleeding episodes, and any history of bleeding disorders in the family. Blood samples will be taken for various diagnostic tests, the platelet count and other clotting factors will be taken into consideration. Tests will be repeated fairly often, since the clotting factors may change over time.
 
Bleeding can happen anywhere and anytime from your child’s body. It can occur in the nasal passage, oral cavity or ears. There may also be internal bleeding... which can lead to pain, inflammation, and bruising. A few of the most common manifestations of hemophilia are bruising, nose bleeds, bleeding gums, joint pain and inflammation, and these are difficult to stop due to the lack of clotting. 
 
Psychological Effects on Children
Children with hemophilia find it difficult to come to grips with the fact that they are different from other children. For school aged children, it may cause them to miss classes and this tends to cause them to lag behind their classmates. As a result, this may contribute to poor academics; put a strain on extra-curricular performance; and a subsequent lowering of self-esteem may follow. In rare cases, school personnel may be insensitive to your child’s condition, which can make things even worse.
 
How to Cope With It
So far, there is no cure. There are treatments and medications that can provide some help with the effects of hemophilia. In sever cases; your child may need surgical intervention to treat other effects of the disease. Your child may need basic first aid, that is, rest, ice application, compression and elevation of the bleeding area. He/she may require a Central Venous Line (CVL) device too. Medicines may include antifibrinolytic proteins (local blood clotting agent), or desmopressin for type A patients.
 
This is a rare disease, still searching for a cure. If your child is diagnosed with it the best you can do is to take special care of him/her and provide all the moral support you can.


Health Organizations We Support

Susan G. Komen - Fighting Breast Cancer     Juvenile Diabetes Research Foundation   Miracle Flights - Life Saving Travel for Children    Kids With Courage Foundation - Empowering Kids With Type 1 Diabetes

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