Djurdjica drinks Viagra in order to survive: confession of a young woman suffering from rare disease (PHOTO)

Young woman from Djevdjelija, a the south of Macedonia, Djurdjica Caeva (38) drinks Viagra every day in order to survive. Her sickness wasn't registered in Macedonia till recently, nor there was any treatment for it. The situation is a bit better now, but Ceava still struggles every day against this dangerous incurable disease.  

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She has been suffering from pulmonary hypertension for five years now, extremely rare disease which can be fatal without proper treatment. That is also how long her fight lasted against state institutions for this disease to get registered and to cover the expenses of the treatment, which, depending of the stadium of the disease, type and quality of medication, can reach up to 10.000 euros a month.

Foto: Facebook/Gjurgica PH Kjaeva

- From a normal person i became a disabled person. I cant move all the time because i get tired and i lose my breath. My sickness has been diagnosed on time, but its treatment is not covered entirely by health fund. Because of that, to be able to breathe and move, i drink 150 milligrams of sildenafil, the generic name for Viagra. 100 milligrams costs 10 euros, and i am drinking 150 milligrams of Viagra. Imagine how much that is on monthly levels, and plus,  have to drink medications for my liver, kidneys do keep them intact.... You know, it cures one thing, in my case only helps, and in another it destroys - said Djurdjica for our portal.

Foto: Facebook/Gjurgica PH Kjaeva

Pulmonary hypertension is a disease that makes it difficult for the blood to flow in the lungs, thereby increasing the pressure in the right heart chamber, and in addition to difficulties in breathing, this can lead to heart failure and death. The disease is incurable, but with appropriate treatment patients can have greatly facilitated life.

Foto: Facebook/Gjurgica PH Kjaeva

Caeva struggled and fought to get the cheapest medicine for her illness on the positive list of the Fund for health because the therapy is very expensive. Thanks to her persistence, the drug is registered, a primary therapy for this disease is now free through the Health Insurance Fund.

Foto: Privatna arhiva

- I am still drinking Viagra, that is the main therapy. However, there is a limit of tolerance when you can take Viagra. In any case, since 2014 when i started the struggle with the institutions, things regarding medications are going for the better. Before now i had nothing, i bought everything myself, although it is still difficult because i am still getting Viagra myself - said Caeva.

Foto: Facebook/Gjurgica PH Kjaeva

What is normal - the breathing - presents huge major effort for patients with pulmonary hypertension, which can frighten and discourage them. While most people breathe automatically, for patients with this disease every breath is a new challenge. There is a constant hunger for air because the internal organs do not have enough oxygen.

Foto: Facebook/Gjurgica PH Kjaeva

People with pulmonary hypertension have no visible symptoms of the disease. There are noticeable bluish-purple lips, which is why this disease is known as a disease of blue lips, and the symptoms are usually shortness of breath and fatigue, and sometimes dizziness and loss of consciousness. These symptoms develop gradually over an extended period which is why it is difficult to detect and diagnose. As the disease progresses, it can be increasingly difficult to carry out the simplest tasks, and patients no longer have a normal and productive life.

Foto: Privatna arhiva

Her greatest support and help are her husband Ranko and 13 year old son Boris. 

Foto: Privatna arhiva

- Its difficult for me when i am out of breath, but i have a will to live while i watch my son and my husband. Its a true question how to deal with this disease, and not to disappoint your family. Every day is a struggle. The sooner the treatment starts, the sooner you can treat the disease, to slow down the progression and to live long enough to show that the sickness can't limit you completely. However, there are limitations because of the disability that isn't visible, and it is constantly around us while we do even the simplest house chores. I can move, i am not tied up to a wheelchair, but if there is some event i have to be or if i should walk longer distance i have to use a wheelchair because of fatigue of the heart and it's hard to breathe. When people see me without a wheelchair, they can't even imagine that i have a disability, because it is not visible - said Djurdjica and admits to not leaving the house in the past three months, and if there is need during the day, she breathes oxygen before sleep.

Foto: Facebook/Gjurgica PH Kjaeva

Caeva is a founder and the president of the Association for pulmonary hypertension "Moment Plus". Thanks to her struggle, this disease has been put into register for rare diseases, and from September 2015 the basic therapy started over the project for rare diseases.

Another eight patients are suffering from this disease in Macedonia, and over 25 million people in the world are suffering from pulmonary hypertension. 

(Telegraf.co.uk / D.J.)