This World Hemophilia Day is an opportunity to put an end to the clichés circulating about this disease.
- Hemophilia is a recessive hereditary disease linked to the X chromosome due to the absence or deficiency of a coagulation factor.
- The diagnosis is based on the demonstration of a prolongation of the blood clotting time, and treatments exist.
Many received ideas circulate about hemophilia. “It is clear that the general population has little or no knowledge of these diseases”, deplore the French Association of Hemophiliacs (AFH) and the health sector for constitutional haemorrhagic diseases (MHEMO).
1/ Hemophilia only concerns men: it’s not true!
Men represent a large majority of hemophiliacs. Women who carry the genetic mutation responsible for hemophilia without necessarily having symptoms are called carriers and can transmit the disease to their children.
However, approximately one-third of carriers of hemophilia have low clotting factor levels and show signs of bleeding, which are most often comparable to those of minor hemophilia. Exceptionally, some of them have a genetic condition leading to severe or moderate hemophilia.
“It is necessary to diagnose this hemorrhagic risk from childhood and if necessary, to set up appropriate care”, estimate the AFH and the MHEMO. “Precautions should be observed regarding the use of certain medications, medical procedures, operations, dental extractions, pregnancy or childbirth”, adds the patient association.
Besides hemophilia, other constitutional bleeding disorders affect both men and women equally.
2/People with hemophilia cannot play sports: that’s not true!
The practice of a physical activity or sport is strongly encouraged for people suffering from bleeding disorders if they take the precautions adapted to their situation.
Regular exercise allows you to work on muscle strengthening, coordination, general physical condition, mobility, self-esteem and avoid overweight. “Of course, the benefits should not make us forget the risks associated with certain sports practices. Indeed, for everyone, sport can be the occasion of acute injuries or chronic lesions”, prevent AFH and MHEMO.
3/People with hemophilia bleed out when they cut themselves: that’s not true!
“We do not bleed more abundantly at the moment but longer”, sum up AFH and MHEMO. Rare hemorrhagic diseases are diseases that are most often invisible, because the majority of bleeding is internal. Repeated bleeding in the joints can over time cause irreversible damage and thus alter the quality of daily life: reduce people’s ability to move and induce significant pain. Bleeding from the mucous membranes can in particular cause heavy periods that are potentially disabling in school, social and professional life.
4/Hemophiliac children cannot follow a traditional schooling: this is false!
Children affected by hemophilia, von Willebrand’s disease or a rare bleeding disorder are welcomed in a regular school environment, like any other child. To secure the reception of children, it is recommended to set up a “individualized reception plan” (PAI), such as for children or adolescents with chronic illness, food allergy or intolerance.
Hemophilia is a serious and rare genetic disease that affects nearly 8,000 people in France, all severities combined. Taking into account the most severe forms of Willebrand’s disease, platelet pathologies and other rare deficiencies in coagulation proteins, it is estimated in France that more than 15,000 people are affected by a faulty coagulation process.
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