Jelena Ilic: Ignoring Limitations of CF and Planning for a Future in Serbia
“The majority of people with CF in Serbia share the same attitude [as me]. They have long term plans and ambitious goals for their future”
Jelena has lost 4 friends with CF in the last year. Half of her paycheck is spent on medication, a great deal of which she must buy abroad. Her only access to physiotherapy is when she gets hospitalized in Serbia. She knows her chances are grim for getting a lung transplant in a country where the necessary surgery is not performed.
Yet, Jelena is the very embodiment of a CF fighter. She has invested in a college degree, a successful career and long term plans for her future, including marriage. She has achieved all this despite her full awareness of the prospects for people with CF in Serbia. She does not feel alone in this attitude: “The majority of people with CF in Serbia share the same attitude. They have long term plans and ambitious goals for their future,” she tells us.
Like many other people with CF, Jelena was diagnosed shortly after birth, during a time when there was little awareness of the disease and available therapies were limited. It might have been this limited knowledge, coupled with her relatively good health, that allowed her to have what she considered a normal childhood and adolescence. She recognizes the major role her parents played in enabling her to have the same experiences as other children of her age. Thanks to their limited access to the internet during their daughter’s childhood, Jelena’s parents were not exposed to a multitude of medical opinions and personal views that some find paralyzing. Her father and mother followed their own best judgment and did everything to enable Jelena to live the same life her friends did. Jelena grew up having same experiences and aspirations as her peers.
Today, Jelena feels her disease is catching up with her. With age, her condition has worsened and her need for expensive medication has increased. Jelena also experiences CF related complications more often requiring her to be hospitalized. Yet, she talks about hospital stays with fondness. The local CF center has a large open-air terrace, which enables Jelena to get to know and spend time with other people with CF during their stay at the hospital. The terrace is where the friendships are born and maintained. It is the place where initiatives of the local CF community are discussed.
The disease impacts many of her present-day decisions, including her career. She has opted for a profession in the public sector since a government agency may be more tolerant toward time off, should she need a pulmonary exacerbation, than a private employer would be.
Dealing with CF is no easy task in Serbia. Limited healthcare resources impact every patient and these challenges are further compounded with the struggle to live with a rare disease such as CF. Budgetary constraints in the local healthcare system force adult CF patients to purchase drugs, vitamins, supplements and inhalers out of pocket. CF is not officially designated a disability; which also means fewer protections are offered when it comes to healthcare coverage or employment.
Jelena is one of the few adults with CF who speaks publicly about the disease in the media. She has no problem explaining what CF is to anyone who asks why is she coughing so much. Hers is a prominent voice in the local patient advocacy arena. Jelena’s voice is heard on many platforms and she is makes sure the awareness of CF grows in Serbia.
We are honored to be able to speak with her and to share her story on our page!