Claudia Melotti
Dermatologist with a Master’s and PhD from the University of São Paulo (USP), fellowship at Memorial Sloan Kettering Cancer Center (New York USA), internships at Universidade Hospital 12 de Octubre in Madrid and University College London (UCL). Founder and coordinator of Coriumdermatologia, a dermatology clinic, since 2005.
“I am a medical doctor and one of the creators of the Roki Institute. Diagnosed with Rokitansky Syndrome at 20 years old, throughout the treatment period and even to this day, I frequently face difficulty in obtaining adequate information and finding professionals prepared to deal with a little-known syndrome. The challenges are many, from correct diagnosis, access to qualified professionals, choosing appropriate therapeutic methods for each phase of the syndrome, and achieving better results with minimal physical suffering and emotional distress. Treatment success and the achievement of a healthy life can be attained, mainly with the help of well-prepared medical professionals from various specialties, as well as integrative medicine practices. This guide was produced to introduce you to the syndrome, inspired by the work done by the Center for Young Women’s Health, the Boston Children’s Hospital, the Beautiful You MRKH, and the knowledge acquired in the pursuit of health and well-being. We believe that, with shared experiences and encouragement for constant updating of health professionals, we can build a better history of Rokitansky Syndrome in Brazil.“
Isabella A. Leite M. Barros
Student, currently in her 3rd year of High School, has participated in several social projects throughout her school life, is part of the school and club football teams. Attended a medicine workshop at PUC-Sorocaba and a summer course at Oxford University in the healthcare field.
“I am a teenager with Rokitansky Syndrome and one of the creators of the Roki Institute. When I received my diagnosis at the age of 13, I felt a pain like I had never felt before, as if that news had taken a part of myself away. My subconscious believed that my path in life was going to be the standard one: lose my virginity, meet someone special, get married, and have children. After all, that’s what is expected of us nowadays. The strangest thing was discovering something so big about myself that had always been there, and I just didn’t know it, as if I had lived my entire life with a lie about who I believed myself to be. I went through a period of anger right after my diagnosis. Why me? What did I do to deserve that? What will people think of me if they find out? Nobody knew how to deal with that, and even worse, nobody knew what it was. For a long time, I felt completely lost, didn’t know who to turn to, and didn’t know who I could trust to tell about this recent discovery. As the years went by and I matured, I began to gradually accept myself. One thing that crossed my mind was, will anyone ever be able to love me because of that? It has been five years since my diagnosis, and nowadays, I can finally answer that question. The first person who has to love me is myself, and only this way, I will be able to be loved. For a long time, all I wanted was not to have been born this way, but nowadays, I can say with conviction that it is a part of me, a part of my history, a part of who I am, and, most importantly, it has given me the opportunity to help you who are probably as lost and destroyed as I once was. You are not alone; we are a very large group of warriors, and we will go through all of this together!“
Luciana Nogueira de Almeida Leite
Majored in Business Administration at Fundação Getúlio Vargas, with an extension in Finance at Harvard Extension School. Obtained an MBA in Social Responsibility from FIA – USP. Worked in the financial market and on e-learning projects at MBG-Distance Education company. The administrative and financial director of Colégio Pentágono. Today a founding partner of Beacon School.
“When I found out that my daughter had Rokitansky Syndrome, the news brought not only a whirlwind of emotions but also many doubts. I sought information from the best doctors, psychologists, and psychiatrists, but the answers were too basic, without any explanation that gave me confidence to help her get through this unsettling time, at a stage where doubts are already an intrinsic part of adolescence. For us parents, love never changes, but the need to no longer see so much pain in my daughter made me search for more answers. That’s how I met the Beautiful You organization and the MRKH Conference in Boston. I found medical answers and a lot of emotional support for girls, parents, and family members. Upon returning to Brazil, loneliness, anguish, and doubts no longer took over my life, and the urgent need to make my daughter feel this peace – that I had felt when I received this support – brought the idea of helping other families in the same situation, in order to deal with their emotions and reactions while facing this new reality. That is how, along with Isabella and Claudia, my partners, we managed to create the Roki Institute, to answer all your doubts, concerns, and, above all, to welcome you with a lot of affection! To you, my daughter Isabella, your father and I dedicate this Institute; we are very proud of the way you have faced this obstacle in your life, of the woman you have become, and of the courage you have had to transform pain into love for others!”