p63 EEC International Network Word Communication Onlus
Dott.ssa Giulia Volpato - President and Skin ERN-ePAG contact person
Dott.ssa. Bresciani Roberta - Vice President
Dr.ssa Paola Cristaldi - Councillor in charge of the Scientific Committee
dott.ssa Rachele Volpato - Councillor Treasurer
dott.ssa Claudia Morelli - Councillor Referee Patients with E.E.C. syndrome
Greta Carraro - Councillor Contact person for young volunteers
RED project contact persons:
Dott.ssa Giulia Volpato - Trainer
Cristina Bolzonella - Director and project manager
Dott.ssa Bresciani Roberta - technical staff
Social Cooperative of Cyclades -ALTERA VITA
Executive Board Miltos Sakellariou, Chairman of the Board
Biologist, Prevention Counselor in Addictions, Family Therapist
Giannis Daskos, Secretary Prof of Mathematics, Educator
Eleni Karagianni, Treasurer, Prof of Chemist, Youth worker
Altera Vita Team Antonia Sakellariou, ICT Expert, Project Manager
Pavlos Aimoniotis, ICT Expert, Technical Manager
Miranda Daskou, Biologist, Youth worker
Leonardos Palaiologos, Youth worker
Aggeliki Sakellariou, Occupational Therapist, Facilitator
Eleftheria Pouftsi, Volunteer, Occupational Therapist
Agni Kapella, Logistics, Secretary
Dimitra Sakellariou, ICT Expert, Technical Manager
Alekos Chalavazis, ICT Expert, Technical Staff
Greetings to you who is now reading this page! May you’re curious, may you want to know more about this strange world of rare diseases, or may you’re just like me, different normal!
I am Giulia, 19, and I’m going to the university of political sciences, international relationships and human rights in Padova.
I am a very interactive girl, likeable, autonomic, full of energy and life, may a little self-centred, with lots of friends and people who do appreciate me.
I love fun, dancing, dreams and challenges, I am very creative, love to write poetries and have luck in bad luck: I have a rare syndrome named EEC.
It includes hands and feet malformations, serious eye complications, cleft lip and palate, and usually sparse hair plus sweat glands mutations. Thanks to God I have a blonde lion’s mane and do regularly sweat!
During my 19 years, I have faced many and too many surgeries, more or less critical. The last one was done on October 23rd 2009, with osseous transplantation to the gum for further dental implants. Pain and postoperative symptoms…none! Except for some problem at the hip, from where they have taken a little bone away.
During my life, I have met a lot of people, more or less comprehensive. Unfortunately, there are many ignorant and blockheaded folks who are judging you, staring you from the head down to the feet, keeping you from their kids or reality without ever knowing you well. Thanks to God there are also curious people, sensible and intelligent, trying to understand and asking questions about all these strange and rare things. Then, you take a smile, a look, a word, and you got the beginning of a wonderful friendship.
I’ve got a beautiful relationship with myself: I like my hands just the way they are. They give me the chance to play with my friends to find new ways to take our hands or have fun designing a little elephant on my left hand to entertain the kids or compose puzzles by myself. The same goes for my feet because I love to pick up things with my toes, twisting them like I want to smooch myself. Sometimes I’m picturing myself with every finger and toes, but soon I’ll get back to reality. I don’t like myself as „normal“, I’m doing just anything necessary and more with both my lobster claw hands and feet!!!
I seem to be a "little ninja turtle"!
The biggest problem in my case are the eyes. My independence is nearly impossible. I can’t ride a bike and/or a motorcycle by myself. Even I can’t drive a car. Walking is a danger not only for me but also for third people. I see only in steps, very less, disordered and during phases of several pain diffuse and out of focus.
Anyway, despite this problem I came out of the social science college with 85/100. The second-best grade in the whole class!
At college, I have finally found great people who accepted me as I am without pretending to be different. Also, they have accepted all my pros and cons (and there are many). The teachers understood my situation and made me getting better in any sense. My classmates liked and respected me.
So, I’ve got only to say: « Thank you, guys !!!!!! »
I cannot forget one most important fact for sure: my family!
I have a beautiful 2 and a half younger sister. She is « normal » and together with my mom my strength to go on.
Dad is there in his own way though he lives with a very cool woman in another region. He’s always and forever present. They gave me another big joy: a little 2 years old creature, my second sister. I see her rarely but I love her anyway.
May it be hard to believe, but I know and can play bowling well.
So, before I leave, I would like to share a reflection with you that I have had in my mind for a while: we human beings are always looking for rarities at all. Rare collectables, mostly lost values and that’s why they are rare, rare emotions, rare sensations…but why every time when we stand in front of people with rare diseases we do avoid them and send them away losing everything they can teach us?
Giulia - firstname.lastname@example.org