Throughout the year there are special dates that are directly related to health and you should know about them. The list is too long but every April 17th the World Hemophilia Day and is the ideal pretext to talk about the pathology and its main symptoms. To date, it is classified as the most frequent rare disease in the world.
What are rare diseases?
In the first place, it must be made clear how the rare diseases. All those that show a prevalence of less than five patients per 10,000 inhabitants are grouped in this category. Based on the above, it is estimated that there are between six thousand and eight thousand pathologies in the world. Of these, 72 percent are of genetic origin, while 70 percent exclusively affect the pediatric population.
With respect to Hemophilia is estimated to affect one in every 10,000 newborns in our country. It is also divided into several classes but type A is the most frequent and represents between 80 and 85 percent of the total population of people with this disease.
For its part, the biopharmaceutical company Takeda points out that There are six thousand people identified in Mexico, 60 percent being serious cases. Therefore, it is necessary to talk about the subject to achieve diagnoses more quickly and offer the appropriate treatment for each patient.
Brief history of the disease
Historically, hemophilia is known as the “disease of kings” because it occurred in different members of the royal families in 20th-century Europe. The royal families of England, Prussia, Spain and Russia were some of those affected by this condition. Inbreeding, common among royalty, caused the number of cases among members of the same royal family to be frequent, since hemophilia is a hereditary condition that is transferred mainly from mothers to sons.
“One of the most remembered cases of hemophilia over time is that of Alexei, son of Alexandra and Tsar Nicholas II of Russia, the last members of the Romanov dynasty. It is said that when the royal family was at risk from the outbreak of the revolution, they decided not to flee and stay in Russia because Alexis might suffer some serious life-threatening injury from hemophilia. In addition, it was believed that Rasputin was the only one who could control the young man’s hemophilia”, highlights Dr. Rodolfo Guajardo Moguel, Medical Leader for Hemophilia at Takeda.
How can it be identified?
Hemophilia is an inherited disorder in which the blood does not clot properly, causing internal or external bleeding. This makes patients, mostly men, prone to spontaneous or excessive bleeding after a wound or injury. In addition to this, physical and psychosocial effects can occur, such as limitation of physical activities and exercise, impacting the mood or causing the exclusion of certain social activities.
Sometimes patients can have the disease and take years to receive a diagnosis. The first manifestations occur when undergoing surgery or dental extraction. In these cases, bleeding can affect children in activities of daily living. Others hemophilia symptoms They can be: bruises from minor accidents, tendency to bleed from the nose or gums, swelling of the joints, pain and redness in the muscles.
The importance of early diagnosis of this disease lies in the risk of not receiving treatment at the right time. This can cause weakness and deep pain, mainly in the joints.
For its part, just at the beginning of this 2022 the General Health Council (CSG) published on its page the update of the Hemophilia Care Technical Protocol with password (PT053). The document details the interventions and treatments associated with pathologies that cause catastrophic costs, as is the case with this rare disease. The biggest novelty is that treatments for adults are included for the first time, which constitutes a move towards universal coverage.