Maja Damevska from Prilep: I pus from head to toe and they do not allow me to be treated abroad!

Maja Damevska from Prilep is the only woman in Macedonia who has a diagnosis pemphigus vegetans, a rare skin disease for which he wants to be treated abroad. However, she failed to obtain a conciliatory opinion from the Skopje Dermatology Clinic, although several hospitals, including in Turkey, Austria and Germany, agreed to treat her. The disease causes pus in virtually all parts of the body, severe nail damage and excruciating pain.

- I rot from head to toe, my situation is constantly getting worse. I think my only chances are to go abroad for treatment but the problem is that they do not give me the council opinion. During the 57 days I was treated at the Clinic for Dermatology in Skopje, I survived a real Golgotha. While I was there for 57 days, they did not take my medical history. Their idea was to put me on a high dose of corticosteroids and prove to the whole world that I would be treated with corticosteroids. I was not put on biological therapy, and I was looking for that. All over the world these patients are treated with biological therapy. Request a protocol for treating a rare disease. You will see that it is not the way they treated me. They gave me antibiotics from the same group and from that I had allergic reactions. I barely survived them. I am one in Macedonia. If something like this is being done for me, tell me about those patients who do not have medical knowledge, how they will be treated. "I am not asking for anything from them, but for me to be sent abroad for treatment," Damevska told Sloboden Pecat.

She adds that the council opinion is not given to her so that she can be treated abroad, and for what reasons she does not know.

- I have an answer from a Turkish hospital. I have sent requests in Slovenia, Germany and Austria. They want me to have a council opinion and the state to cover the cost. Because I am the only one in Macedonia, why not try? I do not want to live like this, this is a pain. As a person with a rare disease, I will do everything to make me feel better. "I owe the council," she added.

She also tried to inform the Minister of Health Venko Filipce about the case. In the letter, she stated that the discharge letter did not contain any information about the examinations, allergic reactions and therapies that she survived during the treatment.

As a result of hypersensitivity of the organism, I was given immunoglobulins, the dose of which is not exactly stated in the discharge letter, and it should have acted on the bacterial infection. During the hospitalization, in addition to staphylococci, two more intrahospital bacteria were infected, namely pseudomonas and corneal bacteria. The recommendation for home treatment is with varicose veins baths. After a week and worsening of the pus, I made new swabs in CPH Prilep with isolated Breast Fat and I am again without a recommendation for antibiotic therapy. At the same time, I would like to inform you that I am also a health worker and out of respect for the white coat, I have not taken any other measures so far, Damevska wrote to Minister Filipce.

In addition to ending the 57-day treatment with a worsening of her condition, she claims that she has not been able to receive any biological therapy that can improve her condition. Thus, without a consular opinion to be treated abroad and without drugs to reduce her pain, she is in limbo.

- When I was on the 11th check-up, the doctor wrote that I should be given biological therapy. I talked to the clinic to get the medicine for me and they wanted to provide it on loan from another clinic. But they told me that it was the beginning of the year, that the clinics did not have money and that it would be difficult. I was advised to get my medicine if I could do it myself, but I can't, I don't have that much money. I pus from all sides. They just told me they would call me for the next hospitalization and that was it, my situation is deteriorating alarmingly, adds the patient.

Unofficially, we find out that other clinics have the medicine. Unofficially, one therapy is 3.000 euros.

We failed to get an opinion on the case from the Dermatology Clinic, due to justified reasons of the management and we will try again in the coming days.

The Ministry of Health told "Free Press" that she is a patient with several autoimmune diseases and that she was cared for and treated at the Dermatology Clinic according to all necessary and prescribed procedures.

"The patient is in good general condition and comes for check-ups regularly. Namely, she refused to receive the primary therapy offered to the patient due to personal reasons. The biological treatment for treatment that she requested from the doctors is expensive and is not on the positive list of drugs. Despite this, the doctors from the clinic procured it at their own expense. The therapy is ready for the patient and she will receive it at any moment. The patient received therapy in order to prepare to receive the biological therapy, and after that prescribed therapy there is a 90 percent clinical improvement of the general health condition ", reads the response of the Ministry of Health.

Damevska told us about this that this is the first time she hears that she is preparing to prescribe biological therapy, because no one informed her about such a thing, and that her condition is improving by 90 percent, she said that it is untrue, because it is pus from all sides.

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