Jeanette (not her real name) almost died during childbirth. She suffered from serious bleeding after delivery. Her baby was safe but doctors had a difficult time controlling Jeanette’s postpartum hemorrhage. She was bleeding profusely. When the doctors informed Jeanette’s family that her life was in great danger; her parents decided to call a priest to bless her. Jeanette’s husband, parents and close relatives cried and prayed for a miracle. After several tormenting hours, the doctors informed them that she was out of harm’s way. Jeanette was diagnosed with hemophilia.
Jeanette’s baby was subjected to blood testing to determine if the baby has hemophilia and prevent bleeding complications.
According to Centers for Disease Control and Prevention (CDC), a woman with history of hemophilia who is pregnant or considering pregnancy is advised to see a specialist in medical genetics or bleeding disorders to determine if she is a carrier of hemophilia. Once confirmed, health care providers can care for the pregnant woman and help monitor her pregnancy. Safety precautions can be done to protect the mother and baby from injury during delivery.
What is hemophilia?
Hemophilia is an inherited (genetic) bleeding disorder. People with this rare disorder do not have enough of a certain protein in their blood which is responsible for controlling bleeding. As a consequence of clotting factors deficiency, the blood does not normally clot. Affected individuals may bleed for a longer time after experiencing an injury compared to others.
There are around 10,000 Filipinos with hemophilia according to the World Hemophilia Federation (WFH). The organization also points out that an estimated one million Filipinos may possibly have von Willebrand Disease and other bleeding disorders but only 1,200 have been identified so far.
Signs and symptoms of hemophilia may vary and the severity may depend on the person’s level of clotting factors. Mildly reduced clotting-factor level may cause bleeding only after surgery or trauma. Severe deficiency may result to spontaneous bleeding.
Individuals who have spontaneous bleeding may experience unexplained and excessive bleeding due to cuts or injuries. It may also involve uncontrolled bleeding during surgery or dental procedures. People with several clotting-factor level deficiencies may develop many large or deep bruises; unusual bleeding after vaccinations; and unexplained nosebleeds. They may also experience pain, swelling or tightness in the joints and observe blood in their urine or stool. Infants may display unexplained irritability.
Acute signs and symptoms of hemophilia are sudden pain, swelling and warmth in large joints (e.g. knees, elbows, hips and shoulders, arm muscles, and leg muscles). Other critical signs are painful, prolonged headache; repeated vomiting; extreme fatigue, neck pain, and double vision. An injury can become an emergency case if the individual involved has severe form of hemophilia.
A test can be conducted during pregnancy to determine if the fetus is affected with hemophilia but such process may have certain risks. Pregnant women who are considering of undergoing the test are advised to discuss pros and cons with their physician. Adults and children can have a blood test to determine clotting-factor deficiency.
Hemophilia may be diagnosed at between age of 9 months and two years old. In some cases, a person may not be aware that he/she has mild hemophilia until he/she undergoes surgery or experiences an injury.
Treatment for hemophilia may include receiving clotting factors replacement therapy, medication, and treatment for joint bleeding and other problems.
Treatment may depend on type and severity of hemophilia. Patients with mild hemophilia can be given the hormone desmopressin (DDAVP) intravenously or through nasal spray. Individuals with moderate to severe hemophilia A or hemophilia B may require infusion or recombinant clotting factor. Those with hemophilia C may need plasma infusions.
Physicians also recommend regular infusions of DDAVP, taking of clot-preserving medications, application of fibrin sealants on wounds, physical therapy, vaccinations, and first aid for minor cuts.
Unfortunately, there is still no known cure for hemophilia but with proper care and treatment, people with hemophilia can live a productive lifestyle.
Last April 17, 2015, the WFH marked World Hemophilia Day with a Global Online Family Tree at http://www.worldhemophiliaday.org/ to build awareness. WFH focuses on the value of collaborative care in supporting the global bleeding disorders community for World Hemophilia Day. The site allows people to share personal stories and experiences about their struggle with bleeding disorders and how they manage and live with their condition. People can also post about their journey on WFH’s Facebook page or follow WFH’s Twitter @WFHemophilia.
“Count Me In”, a Hemophilia Awareness Campaign was conducted last April 11 and 12, 2015 at Glorietta Activity Center, Makati City. The mission of the program is building a family of support for people with bleeding disorders.
“We want to encourage people with Hemophilia, von Willebrand Disease and other bleeding disorders that even though our condition is life-long, we can be productive members of the society,” Andrea Echavez, “Count Me In” lead campaigner who has von Willebrand Disease, said.
There are several hemophilia groups in the Philippines including HAPLOS,
the national membership organization and its chapters, HAPI (Cebu), HAnD (Davao), and Blood Brothers (Manila).
WFH has also come up with the following creative ways to raise awareness about hemophilia and other blood disorders.
- HemoAction Games online – This medium teachers players, particularly children how to prevent bleeds and manage hemophilia. Users can enjoy the interactive games and at the same time learn about the “clotting process, types of bleeds, factor infusions, and suitable physical activities”.
- Journey Around the World is an experimental, educational program that is suited for different ages and occasions. It is ideal for facilitators of hemophilia organizations. Activities like family camps, summer camps and weekend retreats are great opportunities to spread awareness about bleeding disorders. As of the present, there are 10 participating countries namely Botswana, Egypt, France, Japan, Russia, Nepal, Mexico, Peru, Senegal, and Thailand.
- Global Feast is an international event that helps bring together friends, family and the whole community. WFH strongly encourages people around the world to take an active role in raising awareness about bleeding disorders and raising funds for the WFH mission.
Photo from WFH website.