Have you heard about our conference but not yet decided if you want to go? Cristina Ferreira went all by her self from Portugal to Bulgaria to join us in 2017. Read her story:
I come from a Portuguese Huntington’s disease family. My mother was diagnosed with Huntington’s in 2012. At this point she was already symptomatic.
Over the next few years, I started to collect information about the disease. At the national Portuguese association website, I read about the European Huntington Association (EHA) conference which was going to take place in Bulgaria, September 2017.
I decided to go.
It was my first time travelling alone that far abroad. It was my first time focusing on a disease all day long, surrounded by strangers, speaking a different language. And I was going to use my own vacation and money on it.
But I decided to take a chance. I wanted to get reliable information about the disease directly from the experts.
The night before I went to Sofia, my bag was empty as well as my will to go. I painted for a while, procrastinated, until I was encouraged not to think that much and just “pack my bag and go”.
I did not know then that Sofia was going to be a great choice: it would inspire me, increase my knowledge and connect me to a large Huntington community.
The conference was quite a flash. I felt as if I was inside of a kaleidoscope. It was patients sharing their own stories, information from local associations, professionals talking about their experiences, and researchers presenting the most recent data in the field of Huntington’s disease.
Everything went by so fast. In a few days I fitted in, I made new friends, established a network, learned a lot from the disease itself, about ongoing trials and associations.
Every morning we walked with enthusiasm and joy through the streets of Sofia. We were a mixed group – a proud group – connected by one disease. No stigma in the air.
At the end of the conference, we were all hugging each other. It felt like a big family meeting – only a rare one.
I was not excited to go in the beginning, but the European Huntington Association conference started my engagement with the global Huntington community. It inspired me to continue my journey, and since 2017 I have been actively participating in activities related to the disease.
Now, I’m an EHA representative for the HD-COPE team, a global coalition that aims at empowering patients’ perspectives in research on drug development and treatment.
Why? Because we are stronger together. We really are.
So, my only lesson is to “Pack and go”! Make things happen, because everyone matters. Sometimes Huntington’s disease can come with very good surprises. And there are plenty of hugs to share.
Register for our conference here: www.eha2019.no