Adapting To Change: Sustaining Care In A New World

Each year on April 17 the international community pauses to commemorate World Hemophilia Day. The theme this year is Adapting to Change: sustaining care in a new world. The ongoing COVID19 virus has forced humanity to adjust to a new normal way of life as we navigate this global pandemic together. Every year, landmarks around the world are lit up in red as part of the World Hemophilia Day “Light It Up Red” campaign. Last year, a “world record” was set: 98 landmarks around the world were lit up in a show of solidarity with the hemophilia community. The day is set aside to bring awareness to hemophilia as well as other bleeding disorders. Since 1989, World Hemophilia Day is the day the entire bleeding disorders community comes together to celebrate the continuous advances in treatment while raising awareness and bringing understanding and attention to the issues related to proper care to the wider public. The World Federation of Hemophilia defines hemophilia as a bleeding problem. Individuals with hemophilia do not bleed any faster than normal; however, they can bleed for a longer time. The blood of such individuals does not have enough clotting factor. It should be noted that clotting factor is a protein in blood which control bleeding. The World Federation of Hemophilia states hemophilia is quite uncommon. Approximately 1 in 10,000 people are born with it. The World Federation of Hemophilia estimates that 400,000 people worldwide are living with hemophilia. In Jamaica the Hemophilia Society of Jamaica is tasked to raise awareness and advocate for persons living with hemophilia in order for them to access treatment. Alex Parkinson, co-chair of the Hemophilia Society of Jamaica (HSoJ) declared that just fewer than 300 Jamaicans are known to have the condition. Parkinson added, hemophilia often leads to deformity of the joints, such as elbows, knees and ankles. He mentioned that there are always challenges to source drugs to treat hemophiliacs. In a telephone interview Parkinson said Factor 8 and Nova 7 are two of the most commonly used drugs to treat individuals who suffer from hemophilia. These drugs replace the protein needed to clot the blood of those who are hemophiliacs. The drugs he said are injectibles and are administered intravenously. The Hemophilia Society of Jamaica over the years has partnered with the government in garnering support for those Jamaicans who are impacted by hemophilia, especially since the drugs used to treat hemophiliacs are quite expensive. Mr. Parkinson said that the HSOJ is desirous of getting assistance of wheelchairs from corporate Jamaica or Jamaicans in general to assist their members who are challenged with their mobility. He added that in some instances those with severe hemophilia are unable to work. Perhaps corporate Jamaica could assist the Hemophilia Society of Jamaica (HSoJ) in sourcing employment opportunities for those who are both affected and impacted by hemophilia. Hemophilia A is the most common type of hemophilia. This means the person does not have enough clotting factor VIII (factor eight). Hemophilia B is less common. A person with hemophilia B does not have enough factor IX (factor nine). The result is the same for people with hemophilia A and B; that is, they bleed for a longer time than normal. The level of severity depends on the amount of clotting factor that is missing from a person’s blood. Individuals with severe hemophilia usually bleed frequently into their muscles or joints. They may bleed one to two times per week. Bleeding is often spontaneous, which means it happens for no obvious reason. Individuals with moderate hemophilia bleed less frequently, about once a month. They may bleed for a long time after surgery, a bad injury, or dental work. A person with moderate hemophilia will rarely experience spontaneous bleeding. People with mild hemophilia usually bleed as a result of surgery or major injury. They do not bleed often and, in fact, some may never have a bleeding problem. People with hemophilia can bleed inside or outside the body. Most bleeding in hemophilia occurs internally, into the muscles or joints. The most common muscle bleeds occur in the muscles of the upper arm and forearm, the iliopsoas muscle (the front of the groin area), the thigh, and the calf. The joints that are most often affected are the knee, ankle, and elbow. If bleeding occurs many times into the same joint, the joint can become damaged and painful. Repeated bleeding can cause other health problems like arthritis. This can make it difficult to walk or do simple activities. However, the joints of the hands are not usually affected in hemophilia (unlike some kinds of arthritis). How is Hemophilia Diagnosed? Hemophilia is diagnosed by taking a blood sample and measuring the level of factor activity in the blood. There are three forms of hemophilia. Hemophilia A is diagnosed by testing the level of factor VIII activity. Hemophilia B is diagnosed by measuring the level of factor IX activity. Hemophilia C; some doctors use this term to refer to a lack of clotting factor XI. If the mother is a known carrier of hemophilia, testing can be done before a baby is born. Prenatal diagnosis can be done at 9 to 11 weeks by chorionic villus sampling (CVS) or by fetal blood sampling at a later stage (18 or more weeks). Treatment for hemophilia is very effective. The missing clotting factor is injected into the bloodstream using a needle. Bleeding should be treated as quickly as possible. Quick treatment will help reduce pain and damage to the joints, muscles, and organs. If bleeding is treated quickly, less blood product is needed to stop the bleeding. In the midst of this pandemic let us remember those who are inflicted by hemophilia. Additionally, there will a number of activities globally utilizing various social media platforms to observe the day. In support of World Hemophilia Day we are asked to wear red to symbolize our awareness and support of those impacted by this serious blood disorder. Wayne Campbell is an educator and social commentator with an interest in development policies as they affect culture and or gender issues. waykam@yahoo.com @WayneCamo #WorldHemophiliaDay ©