What is parahemophilia? It is commonly known as Factor V deficiency (FDV) and is a clotting (or coagulation) disorder where a specific protein is missing from the blood so that injured blood vessels cannot heal in the usual way. The Factor V protein is a catalyst, accelerating the process by which prothrombin is converted to thrombin, the initial step in clot formation. FDV is usually inherited in an autosomal recessive fashion, meaning both parents must carry the gene to pass it on to their children; it affects men and women equally. The signs and symptoms of the condition It can begin at any age, however, in the most severe cases it is apparent in childhood. It commonly causes nosebleeds; easy bruising; bleeding under the skin; bleeding gums and prolonged excessive bleeding for example after surgery. Women can have prolonged menstrual bleeding (menorrhagia). Bleeding into joint spaces (hemarthrosis) can also occur, although it is rare. Severely affected individuals have an increased risk of bleeding inside the skull (intracranial hemorrhage), in the lungs (pulmonary hemorrhage), or in the gastrointestinal tract, which can be life-threatening. Sources: Great Ormond Street Hospital for Children NIH U.S National Library of Medicine
Despite the challenges I have always been determined to complete my education. I graduated with a bachelor’s degree in Commerce and another bachelor’s degree in Education for Teaching. I also received diploma certificates in computer applications. I have worked as a teacher for seven years in a renowned school in my city. Currently I work with an IT firm as a quality assurance officer and content writer. My involvement with the hemophilia community - helping to educate and raise awareness My father became President of the Hemophilia Society Ahmedabad Chapter in 1999. He continues to serve and work with the hemophilia community. I joined the executive committee of this society in 2002. Many challenging circumstances have come into my life, but my work with the bleeding disorders community makes me feel more confident and independent. The organisations within the bleeding disorder community are making important strides in addressing women and bleeding disorders. My mission is to find other women who are struggling with hemophilia or other bleeding disorders in my community. I want to educate and acknowledge them with respect, making sure they know “women can be the bleeders too.” I want to show women how magnificent they are, and to inspire them to step up and grab the life they’ve dreamed about with both hands. A few months ago, I had an allergic reaction to my treatment of fresh frozen plasma, a plasma protein allergy. My hematologist said there is no remedy. I would be lying if I said that I am not worried, grinding my teeth, and flying into rages. Recently on 14th November, I got acute pain due to an ovarian cyst, but I was afraid of having an FFP transfusion, so I took oral medication. This was not a major pain, but I am afraid what to do in case of a major episode. This is my medical condition. Dealing with any chronic illness can be anxiety-inducing and isolating when others don’t understand. It is very discouraging when we people with such deficiencies can no longer live a ‘normal’ life, but we ‘look normal’ to the world. Due to hemophilia I face many personal problems in my life, but I face them with strength and I am focused on making my future bright.
Further information Great Ormond Street Hospital for Children NIH U.S National Library of Medicine Hemophilia Federation India The Hemophilia Society (UK) National Hemophilia Foundation (US) World Federation of Hemophilia Disclaimer Blogs and news are for information only and do not form the basis of medical advice. Patients should always seek the guidance of their medical team before making changes to their treatment. Views expressed are not necessarily the view of Rare Revolution team or NRG Collective Ltd.
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