Christine Rodien-Louw 55, leaving her native Western France after her Uni studies more than 30 years ago to go to work in Paris. Working for a healthcare group’s Financial Department, I’m also the APTED volunteer chairman (French Association for NET PATIENTS).
I discovered N.E.T 10 years ago when my husband Pascal was diagnosed. A life-changing event ! Our first instinct was to call my brother, an Endocrinologist as there was at least one term I knew, then, with his help, looking for the best Centre to take on this battle. In came in our life some obscure acronymes N.E.T, PET, DOPA, MRI, PRRT, 5HIAA, sometimes in French, often in English, and already a battle to understand what we were dealing with?
We then heard about a patients’ association that had been newly created and we felt like wanting to meet other patients to not feel isolated and to see how we could help. I was only accompanying my husband on his medical journey at first, including traveling abroad and started to juggle work, trips, support and info research. Towards the end of his life my husband wanted me to come along to APTED meetings and INCA’s one too, he was copying me in on various files and projects.
It was only when Pascal passed on, that I understood that he wanted me to take over. Maybe he understood well ahead of me that my past experiences: health issues in my youth needing help, teaching, contact with the greater public, trips in challenging areas, whether private or professional as well as a tenacious and loyalty trait would lead me where I’m currently with you and this for a while yet. « La santé nous éloigne, la maladie nous rapproche » Henri Frédéric Amiel Journal intime 1854