BOGOTA – Several Colombians suffering from Huntington’s disease and their families will meet with Pope Francis this week in Rome, where the first international gathering of people affected by the degenerative disease is taking place.
In the first encounter of its kind for any pope or world leader, Francis will meet with Huntington’s disease sufferers on Thursday at the Vatican in an attempt to bring increased attention to this affliction.
On hand for the meeting with the pontiff will be Jhon Jairo Zuleta and his family.
Just like the other 1,000 Colombians suffering from Huntington’s, Zuleta, who moves with difficulty around his humble home in Medellin’s Comuna 13, also has problems speaking and even makes involuntary movements, which in the past had led the malady to be called “St. Vitus Dance.”
“My husband began to be sick at age 28 and now he’s 43. Sometimes the illness lightens up, like now, or it becomes aggravated, but it’s chronic and slowly progresses. Each day he gets sicker. His mother also died from Huntington’s and in recent years she was in a wheelchair and had to have everything done for her,” Claudia Velasquez, who devotes herself exclusively to caring for her husband, told EFE.
Huntington’s disease, which affects 5-7 of every 100,000 people, is a serious, rare and hereditary disease that affects the neurons and muscles and for which there is no cure.
In June 2015, the Colombian Health Ministry included it on its list of chronic, debilitating and serious diseases that may be fatal and which affect fewer than 1 person in every 5,000.
Since last year, the government has been pursuing a plan to provide for the needs of patients with these rare diseases and to foster technical cooperation with other countries to improve training for health professionals.
Velasquez, 38, has four children and manages to support the family on the wages of the older ones since, at present, she and her husband receive no public support to help pay for the treatment he needs.
“They took the government help away from us a while ago, it’s been two years since we’ve received anything because my kids are already 18, but I have one who is also disabled ... and has no job, so I have to take care of both of them,” she said.
Although scientists discovered the “Huntington’s gene” 25 years ago, they still don’t know why it shortens people’s lives and affects them as it does, or why it’s so prevalent in South America.
Treatment for the disease costs about $500 per month, in addition to the costs of therapy, and many people in Colombia simply cannot afford that.