Buen camino! Good walk – or enjoy the journey – that´s how everyone greets each other on Spain´s historic Camino de Santiago. And we had the privilege of joining 80 others from the global HAE community on a three-day walk that took us through beautiful countryside to the magnificent cathedral at Santiago de Compostela, where pilgrims have trekked for centuries.
Our walk proved that people suffering from a debilitating illness can achieve their goals. It was a wonderful way to start our experience of the 2016 HAEi Global Conference hosted by Spain in May. Not only did it give us a taste of Galicia´s lush rural lifestyle, it was a chance to form special bonds with HAE families from around the world. As we travelled by bus from Madrid we shared stories of how people coped with attacks, the latest treatments, and the help provided by health authorities – or in many cases, the appalling lack of help.
On the walk, as we left behind jetlag, tramped up and down hills, crossed rivers and developed a few blisters and sore muscles, there was the chance to walk and talk with our new friends, or just walk alone at our own pace and enjoy the ambience.
On the third day, after walking into the city of Santiago and marvelling at the huge cathedral said to house the ashes of St James (Santiago) we were invited to a special ceremony hosted by the Galician minister of health, which was covered by the local media. The next day, we went by bus to Fisterra, on the wild Atlantic coast, where many pilgrims go on to finish the walk.
By the time we returned to Madrid to join the rest of the 550 delegates for the HAEi conference, we had close connections and a special shared experience. We´d heard first hand from fellow walkers from Venezuela, for example, how difficult and expensive it was for them to access essential treatment. I was particularly keen to learn how the HAEi Global Program was gearing up to help more patients in countries where there was no government assistance.
Other highlights were hearing about the latest research in San Diego and in Europe, the medical experts panel, and screening of “Special Blood”, a documentary made by Californian patient Natalie Metzger funded by HAEi.
We were also treated to a dramatic flamenco performance, a formal dinner and disco, and a tour of Madrid. All up, a truly informative and great experience – roll on the next HAEi global gathering.