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  1. #1

    Red face Wanita Bertubuh Elastis karena Sindrom Langka


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    Adik perempuan fotografer Ilaria Di Bagio yang bernama Gioia didiagnosis mengidap penyakit langka bernama Sindrom Ehlers-Danlos. Sejak tahun 2011, Ilaria pun terinspirasi untuk mengabadikan keseharian Gioia dan bagaimana Gioia memandang tubuhnya sendiri.


    Gioia menarik hidungnya yang bisa melar melebihi orang normal. Kulitnya memang sangat rapuh dan mudah terluka. Gioia didiagnosis dengan Sindrom Ehlers-Danlos sejak usianya masih tujuh tahun. Sejak kecil sang kakak, Ilaria curiga mengapa adiknya mudah cedera tapi susah sembuh.


    Bayangan tangan Gioia yang fleksibel dan bisa ditekuk-tekuk terlihat di dinding. Sindrom Ehlers-Danlos merupakan gangguan jaringan ikat langka yang disebabkan adanya kecacatan pada proses sintesis dari protein kolagen. Gejala yang paling menonjol adalah kulit menjadi super elastis sekaligus sangat rapuh, mudah patah namun susah sembuh.



    Kekasih Gioia, Ivan tampak menggosok punggung wanita berusia 27 tahun itu. Ivan sengaja belajar memijat teknik ayurveda untuk meredakan nyeri yang dirasakan Gioia. Konon sindrom ini tak ada obatnya.



    Foto yang diambil di kolam renang ini memperlihatkan kulit kaki Gioia yang tampak elastis juga di dalam air. Ide untuk memotret keseharian Gioia ini muncul ketika Ilaria kerap menemani saudaranya untuk check-up rutin ke dokter. Tentu saja dengan persetujuan sang adik.



    Gioia tampak menarik kulitnya sendiri. Makin dewasa ia makin terbiasa dengan keadaannya. Foto-foto dalam proyek ini diambil sejak tahun 1997, namun beberapa di antaranya juga diambil dari album foto keluarga mereka.

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