Rare Diseases Croatia

Living with Treacher Collins syndrome (TCS), a rare craniofacial condition that affects development of facial structures and hearing, has given me a unique perspective on the world. I have overcome many challenges in my life by not allowing my rare syndrome to define my everyday life.
My name is Ivana, and participating in the ERN CRANIO network as a patient representative allowed me to expose, both my personal and professional - circle of life.
I grew up in Zagreb, the capital city of Croatia, where my parents taught me to respect the value of 3Ps principle: patience, persistence and perseverance so I can always, at least, try to do what inspires me. This helped me to graduate from the Medical school of Zagreb as a medical doctor and pursue my residency in otorhinolaryngology (ENT), a field that relates to my own everyday challenges - a hearing loss as my most prominent invisible disability that inspired me to dive into the otoneurology sub-specialty in the field.
Today, I serve my patients with humility, compassion and perspicacity as an otorhinolaryngologist or Ear, nose and throat doctor breaking barriers that a person with disability cannot have a meaningful life with purpose.
Having both visible and invisible disabilities, I did not and I do not let them define me, and by volunteering as a motivational speaker or serving as advisor for more associations like Rare Diseases Croatia, I share my personal patient story with parents, others like me, and my colleagues in order to initiate social and psychological breaking down of the barriers in the society.
Nietzsche once said: “There are no beautiful surfaces without a terrible depth”. Being born and living with TCS is not easy, but it can also be a source of inner strength and wisdom. If one can achieve a good psychosocial adjustment, which is challenging but not impossible, then one can find a sense of purpose and fulfillment in a professional career. A strong social support network is also essential, as it allows individuals with TCS to display their skills and talents, and prove that they are more than their physical appearance. Life-challenging experiences can boost self-esteem and confidence, and help individuals with TCS to overcome any social challenge they may face during their lifetime, like bullying or discrimination. With determination and perseverance, along with adaptive strategies like motivation, a positive attitude, and recognition of personal strengths and potentials, one can achieve a positive psychosocial adjustment and excellent social acceptance over time.
In conclusion, I am Ivana and I have a shadow, but my shadow does not have - me. So - "You can't blend in when you were born to stand out" - are concepts that round off nicely my circle of life-aspirations.
Link to website: https://rijetke-bolesti.com/