This is one of the 85 patients who suffer from this condition. The treatment for haemophilia has advanced considerably in recent decades. So the patients have the chance to live a decent life. If before there were blood transfusions, now they are a thing of the past. The newest treatment is the one with recombinant factor VIII. It is not obtained from human blood but from biotechnology, and the risk of transmission of pathogens such as hepatitis B, C, D, HIV or others is excluded. The administration is simple, intravenous, and the patient does not have to be hospitalized.
New generation medication, but not for everyone
New generation treatments are expensive. The average cost for a patient treated with recombinant factor VIII is up to 50,000 euros per year. Because of this, the prophylactic treatment is given only to children and young people up to 18 years old. But what is better? To prevent or treat?
For those over 18 years old, treatment only in case of force majeure
“The medication only comes on the national haemophilia program. It is given only curatively. For patients over 18 years old, we have no medication for prevention. It hurts your soul when a young person who has reached this age will no longer receive treatment except in medium and major hemorrhagic accidents. If they were administered in the same manner as in the case of patients with diabetes who inject their own insulin according to doctors’ instructions, the haemophiliacs would also have a decent living”, explains Dr. Cristina Truica, head of the Hematology Department at Baia Mare County Hospital.
The misfortune of being born in Romania
If in other countries of the European Union patients get to practice a sport, in our country, all those over 18 years old are condemned to live a reclusive life. Living with fear, because at any moment, at any seemingly common fall for us, they can end up in the hospital in critical condition. “It is true that in Hungary patients play football, because the factor level allows them to have a normal life. We can’t talk about such a thing.
The bleeding is in the joint. They appear with joint deformities, some of them are on crutches. Knowing them since they were children, the pain is very great when you see them in adulthood on crutches”, pointed out a renowned doctor from Romania.
Time – the biggest enemy of haemophiliacs
A 14-year-old man was sent to a camp in Vienna to learn exactly how to administer his treatment.The surprise was great for the doctors there when they met the boy. Because he has no disability. All joints are mobile, which is very rare in these patients. “The collaboration between the family and the doctor is very important. Because with every bump or fall you have to go to the hospital within a maximum of six hours of the incident. Then the joint is completely restored. In the opposite case, you are left with joint sequelae”, says the head of the Hematology Department.
≈50% of children receive treatment for preventive purposes
For two years, the administration of preventive treatments to children with haemophilia has been started in Romania. “There are about 20 children who receive medication for preventive purposes. The associations want to establish a National Register for Patients with Haemophilia.
This will increase the quality of life of these patients. The aim is also to increase funds in this segment. Because it is better to do prevention than to administer treatment only for curative purposes”, underlined Dr. Cristina Truica.
We do not know with certainty what the cause of this disease is. But one thing we know for sure. It is not easy to live with such a condition. It is not easy for doctors to know that they can help, but due to lack of funds, mature patients have no other choice but to live reclusely. Or there would be another alternative. To opt for living in another country. Where, even in times of financial crisis, they live a decent life. As all those affected by haemophilia want.
“Haemophilia doesn’t wait until morning !”
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