Families bear the burden of this disease in silence. Pope Francis made us into a community
VATICAN CITY — We are waiting for the pope. He is supposed to come at 11. But then we are told he will arrive at 11:30. The crowd sighs in expectation. People turn to each other and smile, hold hands, murmur in various languages. A few rows ahead of me, a mother juggles a toddler on her lap. A folk-rock band called Miner plays sweetly on stage, their voices a hymn in the cavernous concrete hall.
As I gaze up at the stained glass windows, I feel like I am in church, about to be blessed. Which, in a sense, I am. Two hours ago, I walked in the mid-May morning sun through St. Peter’s Square with a handful of patients from Latin America as bells rang out. Soon we will meet Pope Francis.
I’m sitting in Aula Paolo VI audience hall in the Vatican. Around me are 1,700 people, 150 of them patients — the largest gathering ever of those affected by a fatal genetic brain disorder called Huntington’s disease. HD causes a staggering array of mental and physical difficulties. There are few treatments and no cure. As if that weren’t cruel enough, many people hide the disease, live in isolation. Afraid of discrimination, rejection, condemnation.
Nearly six years ago, my brother died from a wrenching mix of colon cancer and HD. The shock of his diagnosis, his suffering and bravery, and his slow, brutal death nearly broke me. For a time, my family told almost no one the truth.
The stigma of HD, and particularly the plight of impoverished HD communities in Latin America, is what has drawn us to the Vatican, for an event called HDdennomore, or Hidden No More. The organizers hope to shatter that stigma, but also enlist the influential Catholic Church to finally render aid to families. It’s the first time a pope or world leader will speak publicly about Huntington’s disease.
Because society has shunned people with HD, their presence in the majestic, high-ceilinged hall is strikingly powerful. Scores of patients line
