[ad_1]
I mentioned it differently this year
Although this blood disease is considered rare, experts unanimously argue that now that the world is fighting a pandemic, it should be talked about not only more often, but also to dispel myths about hemophilia.
According to Takeda, a pharmaceutical company that supports organizing for people with hemophilia and has made great strides in treating blood diseases around the world, the focus on blood diseases has never been more important.
Chronic diseases like hemophilia have not only come under the scrutiny of medicine due to increased vulnerability, they have also faced new challenges in treating a pandemic. At the same time, the pandemic limited the possibilities of commemorating a symbolic date.
Those interested in contributing to the commemoration of this day are invited by the World Federation of Hemophilia (WFH) to share their photos on social media where they wear something symbolic of the disease in red or tell their story at www.worldhemophiliaday.org .
“COVID-19 has made life even more challenging for people with blood disorders. However, we cannot stop seeking treatment for everyone. World Hemophilia Day is a platform to show the world that our community is resilient and that we will face these new challenges in the same way that we have overcome all the challenges of the past, ”said César Garrido, president of the World Federation of Hemophilia.
Symbolic sculpture
Today, in Lukiškės Square, Vilnius residents will also have the opportunity to see an ice sculpture of an impressive size, reminiscent of a three-meter-high drop of blood, created by the Masters of Ice. Well, and the fountain in the square will glow red.
The Vilnius City Municipality and Vilnius Lighting, which will illuminate the city’s bridges, will also join in the Hemophilia Day commemoration. In this way, the city will symbolically remember a disease in which a person’s blood clots very slowly or does not clot at all.
Still a taboo and an endless myth, the disease sometimes becomes a difficult experience for those who have to hear this diagnosis on the road of life.
The most commonly inherited or rarely acquired hemophilia is a rare disease that affects only one in 10,000 people worldwide. people.
Failure to do so can lead to joint damage over time, and death or bruising can lead to fatal bleeding.
Rare cases
Hematologist Sonata Šaulytė-Trakymienė is convinced that the public is relatively unfamiliar with the disease and even some health professionals, knowing that her patient has hemophilia, are afraid of receiving the necessary treatment.
“Hemophilia is divided into two types: A and B. Form A is much more common, affecting about 1 in 5,000 people. People. At that time, hemophilia B, which is considered slightly milder, affects 1 out of every 30,000 people.
As this disease is rare, there are cases in which the GP does not agree with the patient with hemophilia during their work practice ”, explained the doctor. S.Šaulytė-Trakymienė.
Easier control
According to the interlocutor, although the disease is still incurable, it is now perfectly controlled, and the daily life of people with hemophilia is greatly facilitated by devices that help monitor the level of clotting factors and warn when it is time. prescribing medications.
“It allows the patient to decide what activities they can participate in. For example, if a person is preparing for an active sport, but the device shows that the blood factor level is insufficient, it is better to abstain and, only after taking the medication, to carry out those activities, “said the doctor.
It has long been shown that unstoppable bleeding can be prevented as a preventative measure with regular medications, and extended-release factors were developed a decade ago, with doses reduced three to three times per week, depending on the severity of the disease.
In the last century, such measures were unthinkable in the treatment of hemophilia, and the patients themselves were treated only episodically.
Hematologist Lina Kryžauskaitė also agreed that to improve the quality of life of patients, it was important to control this disease from the beginning.
“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 ”, emphasized the doctor.
“The eyes of fear are very large”
Because hemophilia is an inherited disease and usually occurs at a young age, Doc. According to S.Šaulytė-Trakymienė, it is very important to provide all the necessary knowledge to the child’s parents, educate them and teach them how to live with this disease.
“Due to this objective, there is an association of Lithuanians with hemophilia in our country, which, as in many developed countries of the world, is really strong. This organization represents and unites patients, provides help and information about hemophilia, methods of treating the disease, as well as maintaining relationships with doctors, “said the doctor. S.Šaulytė-Trakymienė.
According to her, although most parents are aware of the possible risks in preparation for the birth of a baby (if their parents, other family members had hemophilia), there are also cases where this is a completely unexpected message for parents.
“When we hear such a diagnosis, their eyes of fear are very large, but we always try to reassure parents, to explain that we live in a time when the treatment of this disease is very advanced.
Of course, the beginning is not the easiest. After all, you must learn how to give medicine to a very young baby. However, during the first visits to the specialists, the parents are trained and prepared both psychologically and physically, and later, as the child grows older, he learns to inject himself.
So although hemophilia is not a cure today, with the advancement of medicine and regular therapy, patients can live a full life, “said the doctor.
Progressive treatment
The President of the Association of People with Hemophilia Egidijus Šliaužys confirms that scientific and medical advances in people with hemophilia can help lead a completely normal life.
The man himself has been suffering from this blood disorder for 44 years and says that life for members of his community today is no different than for healthy people. People receive excellent and progressive treatment so that they can live a full life.
The only difference is that young hemophilia patients need regular injections of clotting factors to ensure normal blood clotting. The association led by Egidius teaches young people to do it on their own and thus promotes their independence from external aid.
The benefits and undoubted advantage of science are also demonstrated by the achievements of Takeda, the leading international pharmaceutical company in the field of hemophilia treatment.
Recombinant clotting factor preparations, which reached the population of the country some time ago, have already changed the relationship between the entire generation and hemophilia.
As these drugs are available to all patients in Lithuania, many younger patients do not remember a different quality of life, and the irreversible joint injuries experienced by the elderly are treated quite quickly today by endoprostheses developed in Lithuania.
It is not just the goal of the World Federation of Hemophilia (WFH), but also Takeda itself to provide the treatment you need. Takeda, which has brought innovative treatment traditions to Lithuania, successfully treats hemophilia patients around the world.
For more than 30 years, the pharmaceutical company has contributed significantly to the modernization and development of treatment methods so that the quality of life of patients is not compromised. The new treatments and technologies available today provide more and more opportunities for patients, and professionals who apply medical innovations in their daily work demonstrate that the patient and their health are becoming the most important thing here.
C-ANPROM / LT / HG / 0013
