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Brezilya'nın Rio de Janeiro kentinde yaşayan 53 yaşındaki Sandra De Santos, Nörofibromatozis (NF) hastalığından gençlik yıllarından bu yana muzdarip.
ÖNCEKİ RESİMLER İÇİN TIKLAYINIZBu hastalık yüzünden vücudundaki kabarcıklıklarla yaşamayı öğrenen De Santos'un vücudu görünüşte ürkütse de mücadelesi takdire şayan.
17 yaşında, 3 çocuğunun babası Jose ile evlenen Sandra De Santos'un aşktan yana şansı gülmüş. Jose, eşine deliler gibi aşık olduğunu söylüyor.
10'lu yaşlarda 20'lerin başında ortaya çıkan duyma kaybı genlikle ilk semptomdur.
NF1'in Nörofibromatozisin en sık tipi olması itibari ile bu yönergelerdeki medikal bilgi NF1'e odaklanmıştır. Tabiî ki temel fikir bu ağı genişletmek ve mümkün olduğunca NF2 ile etkilenen bireylerin takip edilmesine yönelik tavsiyeleri de bir araya getirmektir.