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The severity of the disease varies
According to the doctor, it is easier to imagine people with hemophilia as individuals who have a tendency to bleed. Most of the time, though not necessarily, they are men who have contracted the disease due to a spontaneous genetic mutation, while women, meanwhile, are more likely to be carriers who pass on the altered gene to their male children.
“Sick people are deficient in certain clotting factors, the degree of which determines the severity of the disease. In the absence of clotting protein VIII, a person has hemophilia A and, in the absence of clotting protein IX, hemophilia B, which yourself – a person can start bleeding at any time.
Bleeding can be both in the joint and in a muscle or other tissue, which is why people who have not received proper treatment often face musculoskeletal disorders throughout their lives, which can even lead to disability ”, Says the interlocutor.
In addition to the risk of spontaneous bleeding, it is important to be aware of trauma that can be particularly dangerous for a person with hemophilia.
“Childhood can be a real challenge for a child with hemophilia, while it is very important for an older person to avoid complications and impending disability. That is why proper care, treatment and prevention of these patients is so important ”, emphasizes the doctor.
The onset of the disease is different.
According to Dr. L. Kryžiauskaitė, there are cases when a person does not know for a long time that they have hemophilia.
“Sometimes the entire childhood and adolescence can go by without suspecting the disease, most often in mild forms of the disease. And it is only in the case of major trauma or the need for surgery that hemophilia is known. However, there are other stories where the exact diagnosis is known from the birth of the child. Hemophilia has been reported at the onset of bleeding during surgery. Nowadays this is very rare, because before any major intervention, the necessary tests are carried out and prescribed by a general practitioner ”, says the specialist.
It goes without saying that tests are not the only indicator, they are always combined with human health history, cases in relatives, experiences such as: bleeding longer than usual from shaving or injuries in daily activities.
For this reason, if bleeding disorders are suspected that do not appear after the initial examination, it is necessary to consult a hematologist.
Lithuanians receive effective treatment
“Because it is not possible to predict when a patient with hemophilia will experience spontaneous bleeding, that person is currently receiving prophylactic treatment: clotting factor replacement therapy. Until that treatment, survival for severely ill people was really poor, but now we have the opportunity to provide optimal prophylactic treatment to prevent bleeding in all patients living in Lithuania ”, says the interviewee happily.
Thanks to modern scientific advances, a person, with proper treatment, can live a full life even with a serious illness. Well, and in cases where replacement therapy is not suitable, other treatments are being tried.
Typically, the medications given to a person with hemophilia are given through a vein. The patient himself, in some cases even a child, learns to inject such drugs himself.
Of course, the drugs differ from each other, and there are also differences in the age, weight, and other characteristics of the patients, leading to a different need for the frequency of the drugs, but they generally need to be administered at least three times a week. . .
“Patients with joint damage due to complications of hemophilia are less and less likely to develop a disability, and young people who have received preventive treatment since the onset of the disease no longer differ from their peers in terms of physical condition and activity. . We already have one without hemophilia ”, emphasizes the specialist.
It should be noted that in cases where more extensive interventional procedures are planned, surgeries are planned, the person with hemophilia always communicates with the doctor treating the disease, who coordinates the medication so that all the necessary procedures are carried out safely .
The doctor is also pleased that hemophilia patients have not been affected by the pandemic situation. They continue to receive the necessary drugs electronically, which are reimbursed, so that patients can still be in good condition even now.
The most important thing is to know about hemophilia
Egidijus Šliaužys, director of the Lithuanian Association of People with Hemophilia, also says that the more people know about hemophilia, the easier it is to fight it and help patients.
That is why we organize several camps for children, where they are explained how to inject drugs, how to monitor changes in their body, as well as teaching the basics of a healthy lifestyle and nutrition. We also provide assistance to parents of children and elderly patients, we publish informative publications, we talk about the treatment, its subtleties and importance, because the whole life of a patient depends on correct and constant treatment, ”says E. Šliaužys.
In addition to education, the organization that unites hemophilia patients is engaged in other, no less important activities.
“We communicate with pharmaceutical manufacturers, participate in various international events, and therefore strive to bring the newest and most innovative treatment methods to Lithuania. We also have a basketball team that competes in the amateur league. With our work and projects, we want to show that hemophilia is not a sentence, but a disease that is well controlled in the 21st century, ”says the director of the Lithuanian Association of People with Hemophilia.
C-ANPROM / LT / HG / 0010
