I was born with Cloves syndrome without being diagnosed at birth, despite the presence of angiomas on my neck and down to the soles of my feet, as well as some malformations.
When I was five years old, I lost almost all of my sense of smell and taste due to this disease. However, my family, the doctors, and I (who were far from imagining its existence) normalized all the minor symptoms until I was 14 years old.When I was 14, I developed extremely painful vascular problems in my feet, ankles, and legs, as well as severe scoliosis. After several medical appointments of various kinds, I was referred to a scoliosis specialist at a renowned hospital in Brussels, Belgium, who in turn referred me to a specialist in rare diseases.
She photographed my body and concluded that I had this disease, which was both an exceptional revelation and very difficult to accept. After that, I had to adapt my daily life and resign myself to enduring this excruciating pain, especially when I was sitting in class, walking, or leaning on my feet in any way, when I wasn’t at the hospital undergoing a series of medical tests to confirm that I was indeed a carrier of the PIK3CA gene, and this went on every day for a year and a half.
After false hopes and a long wait, I received Alpelisib for the first time on February 8, 2023. This allowed me to avoid several major operations and greatly reduce my pain, although it is still present at times.
Today, at 18, although I sometimes feel uncomfortable with my body, I have accepted it and am proud of the differences it brings me.
Meet Zoe
