Sexism in the world of hemophilia: why women are not tested for the blood clotting factor and what the risks are

[ad_1]

My daughter was diagnosed with von Willebrand disease at the age of 1 year and 4 months. This is a blood coagulation disorder. Any bleeding for a person with such a diagnosis is life-threatening. We were very lucky that the diagnosis was made before the first serious injury. My daughter’s injection site bled for a long time after vaccination. I was then told that they must have hit a blood vessel. When we arrived for the next vaccination, I asked if it was normal for such a long period of bleeding to appear after the injection. The family doctor immediately referred him to a hematologist. This is how we learned about von Willebrand disease. Another girl of almost the same age was not so lucky. And although the disease was discovered earlier, when the child was not even a year old, it happened because of a brain hemorrhage. The result is 10 years of rehabilitation and struggle for a normal life. This is the price of untimely diagnosis. Because of the myth that blood clotting disorders affect only men, there are very few diagnosed patients among girls. The doctor can suspect any disease, but immediately rejects hemophilia, “because girls don’t get it.” According to the electronic health care system, only 316 patients with this disease have been diagnosed in Ukraine. And there are 1,484 patients with hemophilia. 1 in 10 patients are diagnosed in Ukraine. And 7 out of 10 diagnosed patients in the world, according to statistics, are women. In addition, the course of these diseases is more complicated in women due to monthly bleeding. The girls I mentioned are almost the same age. They have the same diagnosis. No one around knows about my daughter’s illness – it is not noticeable. Another girl spent 10 years in continuous rehabilitation and struggle to be like everyone else. Due to the untimely diagnosis, the consequences are terrible: the vision in one eye disappeared, a part of the body, an arm and a leg was paralyzed, there are neurological problems. The child’s mother made incredible efforts so that the child could walk and went to an ordinary school with his own feet. The girl continues to be treated. And some functions, like vision, will never come back. Could this have been prevented and how? Doctors’ awareness of von Willebrand disease and its symptoms plays a leading role. Both the family doctor, to whom such patients come, and the specialist doctor – dentist or gynecologist, who may encounter significant bleeding. Read also: What kind of help can patients with hemophilia and Willebrand’s disease get – explained by the NHSHU Sometimes women are not examined for the level and presence of a blood coagulation factor just because they are women. Guided by the myth that blood clotting is a problem only for men. In order to diagnose von Willebrand’s disease, a woman must pass purely “male” tests – the level of the eighth factor and the level of the von Willebrand factor. Girls with symptoms should also be examined, because blood clotting is broader than hemophilia. There is also von Willebrand disease. Previously, von Willebrand’s disease was informally called “female hemophilia”, although this is incorrect. Because both boys and girls get sick. This is a genetic and hereditary disease. But every third patient is diagnosed for the first time. Like my daughter, this disease has never been in our family before. Many girls are diagnosed with their first period. They end up in the hospital with severe uterine bleeding. I recently spoke with a woman who was diagnosed with von Willebrand disease at the age of 38. I asked her, did her clinical picture change after the diagnosis, did the bleeding start, did it get worse? No, she lived with the disease since birth, but now you know there is a cure. It is scary not to know about your diagnosis. The main symptoms of hemophilia and von Willebrand disease are prolonged bleeding after injuries. And also – frequent nosebleeds, bleeding gums, a significant number of bruises, significant hematomas and prolonged menstruation in women (7-14 days). It is these symptoms that a general practitioner should pay attention to. If they are present, the family doctor should give a referral to a hematologist for examination. Regardless of the gender of the patient. Awareness of von Willebrand disease will help increase the number of diagnosed patients, especially among women. And if you know about the diagnosis, you understand how to be treated and how to live. It is important for dentists to know about Von Willebrand’s disease. Patients with this diagnosis may experience prolonged bleeding during dental procedures. Bleeding may not stop for a day or two, and such a patient cannot be helped without a clotting factor. Patients with uterine bleeding and periods lasting more than 7 days can consult a gynecologist. All these symptoms can indicate blood clotting disorders. And they cannot be ignored. The state provides patients with blood clotting disorders with medication free of charge. Both for prevention and urgently – in case of injuries or bleeding. Diagnostics and accompanying treatment are also free of charge. Attention and awareness of a family doctor, pediatrician, dentist or gynecologist can save the life of a patient with hemophilia. And not only to save, but also to improve its quality and avert risks. Nina Astaforova-Yatsenko, head of the “Children with hemophilia” charitable foundation, specially for UP. Life Publications in the “View” section are not editorial articles and reflect exclusively the author’s point of view.

[ad_2]

Original Source Link