"Together, We Care" stands as the slogan for World Hemophilia Day 2009 celebrated on 17th
April. The theme embodies a spirit of collaborated and comprehensive care globally to give physical, emotional and psychological treatment for hemophilia patients. 'Treatment for All' could be achieved mainly through correct diagnosis, management and comprehensive care by a group of specialists.
Hemophilia is a genetically inherited, rare bleeding disorder, wherein the blood does not clot normally. Hemophilia could run into generations since it is genetically inherited. Mostly men are affected by hemophilia. Women are just carriers, who take it to future generations. They carry it on one of the two x chromosomes and pass it to their sons through the chromosome. Hemophilia is not carried on the Y chromosome which males receive from their fathers. Hemophilia was so common among Europe's nobles in medieval times that it used to be called the "malaise des rois" or disease of kings.
People with hemophilia would bleed longer than others when an injury happens because they have less or none of a protein clotting factor.
Hemophilia A and Hemophilia B are the two main types of hemophilia. Normally there are 13 different blood components called factors that help with the clotting mechanism in the body. Hemophilia A results from low levels or none of clotting factor VIII, while Hemophilia B is due to low levels or none of clotting factor IX. Depending on the amount of clotting factor present in the blood, hemophilia could be mild, moderate or severe.
Like any other disease, hemophilia also has its signs and symptoms. Hemophilia symptoms may present for the first time during any scheduled surgery.
• Excessive external bleeding that may first present after scheduled dental surgery, injury or any other surgery.
• Internal bleeding in the joints such as the elbows, knee or other joints.
• Bleeding could also occur in the brain. This could be fatal if immediate care is not given.
The bleeding from hemophilia can have fatal consequences hence treating it is very important. The disease cannot be cured, but it can be treated with effective management and proper knowledge of the disease. "It is very good to take advantage of all the different types of therapy you can" says Antonio, a hemophilia patient who lives in Argentina. Treatments are as follows
: Replacement Therapy
: This is an important method to treat hemophilia. It is done by replacing the missing or limited clotting factor. For Hemophilia A, clotting factor VIII is given. Hemophilia B needs clotting factor IX. The treatment involves preventive or prophylactic therapy, which is given in a regular basis. Demand therapy is given only when there is a need to stop bleeding. Home treatment with replacement therapy
: It is done by infusions into the veins. Home treatment helps in treating the patient faster, thereby reducing complications. Doctor visits are reduced and also the treatment is cost effective. Other Treatments Desmopressin
: A man-made factor Desmopressin (DDAVP) treats mild Hemophilia A. It stimulates the factor VIII and von Willebrand factor to increase the protein levels in the blood. Desmopressin is given by an injection or as nasal spray. Antifibrinolytic medicines
: It is a pill that keeps clots from breaking down. These pills are given before dental work, mouth or nose bleeding treatment and for mild intestinal bleeding. Gene Therapy
: Scientists are doing their best to correct the defective genes responsible for hemophilia. The therapy is still on trial basis. Hemophilia care
: Hemophilia treatment does not stop with just medicines, but goes beyond that. Hemophilia treatment centers give treatment, education and assistance for hemophilia patients and their families. These centers have a team of nurses, pediatricians, hematologists, social workers, physical therapists and dentists. World Hemophilia Day gives us the chance to explore the challenges facing this complex disease.
"Our challenge is to ensure that all people with bleeding disorders, no matter where they live, receive proper treatment and care," says Mark Skinner, World Federation of Hemophilia president. So, let us strive for a collaborative and comprehensive hemophilia treatment. Together, we can do it!