According to her, the combination of hepatitis B and D represents one of the most dangerous problems. Despite the fact that many people in Kyrgyzstan live with these diseases, the issue remains insufficiently studied and unresolved.
Patients face a lack of information and the absence of a unified database for tracking cases of the disease, which complicates the assessment of the situation at the district level. Additionally, they experience a shortage of specialized assistance from medical institutions, as well as a lack of qualified specialists. "I underwent three courses of interferon therapy, but none of them were effective," she noted.
The woman spoke about how each treatment course led to relapses and about the numerous side effects that worsened her quality of life. "After the injections, I suffered from high fever and muscle pain, but I needed to keep working to pay for my treatment," she added.
Hepatitis D negatively affects quality of life, manifesting with pronounced symptoms that are hard to ignore:
- Astenic syndrome: constant fatigue and weakness that hinder performing everyday tasks, turning even cleaning into a challenging assignment.
- Sleep problems: insomnia at night and constant drowsiness during the day.
- Depression: not just a reaction to the diagnosis, but a result of disturbances in neurotransmitters and metabolic processes.
- Digestive issues: pain, nausea, and loss of appetite. Some patients may experience life-threatening vomiting and bleeding.
- Liver damage: itching, jaundice, and dark urine - symptoms that require medical attention.
- Portal hypertension: enlargement of the spleen and risk of bleeding due to low platelet levels.
- Ascites: fluid accumulation in the abdominal cavity, which can develop over years.
The woman underwent therapy with a modern drug - bulevirtide, which, although better tolerated, does not allow for a complete cure of the disease. To pay for her treatment, she had to sell her house and work three years without weekends to cover expenses amounting to about $68,000.
"Hepatitis B and D is not just a medical problem; it is a constant struggle for quality of life," the patient emphasized.
Challenges Faced by Patients
Urnisa Erkebaeva, chairperson of the NGO "Stop Hepatitis KJ," shares her feelings: "It is very hard to see people suffering from hepatitis every day." She lost her mother to the disease and now actively helps the patient community. Although Urnisa herself is not a carrier of hepatitis, she is well aware of the problems faced by patients.The patient association helps to convey their issues to government structures. "We try to address the issues, but we do not always succeed, especially regarding access to treatment. Hepatitis D remains a serious problem, as the clinical protocol is ineffective," she noted.
According to Erkebaeva, negotiations with drug manufacturers are necessary to reduce prices. "Some patients are willing to participate in co-payment if the government finds donors and lowers the price of medications," she added.
"We are trying to find solutions, but the main thing is the safety and effectiveness of treatment. Every day I see patients deteriorating, and it is hard, especially when help is no longer possible," Urnisa said.She also mentioned a large family where all the brothers are suffering from hepatitis and the difficulties associated with liver transplantation, which is not always an effective solution.
Although vaccination against hepatitis B has begun in the country, the problem remains relevant, as many young people are facing the diagnosis.
What Patients Need:
- Early diagnosis, as it is critically important for successful treatment.
- Access to modern medications: new drugs should not be a luxury.
- Honest information about the disease, without fear and silence.
- Real support.
In their opinion, the WHO should develop separate recommendations for hepatitis D, and national governments should create patient registries and improve screening.
Photo on the main page is illustrative: suara.com, thesun.co.uk, involta.media, medaboutme.ru.
