HD Jails in Juan de Acosta, Colombia - A Tale of Two Families

On April of this 2006 I had the privilege of traveling to Colombia, South America to visit the small rural town of Juan de Acosta to help impoverished families struggling with HD. In case you haven’t heard of Juan de Acosta, it has the distinction of having the second largest concentration of person’s with HD in the world, right after Lake Maricoba in Venezuela. I was privileged to take over 500 pounds of clothing, the first information they had ever received on Huntington’s Disease (in Spanish of course) and over two and a half million pesos which were used to provide two months of assistance to 20 families (not hard when the average monthly income is only $40 US dollars per month).

In addition to the normal complications we have in dealing with our loved ones with HD, they are also doing it, but in deplorable living conditions too. None have potable water. Most have no running water in their homes, no transportation or medications and some don’t even have electricity either! Prior to my ten day stay in Juan de Acosta, I had the opportunity to visit families struggling with HD in Medellin for five days.

I was really piqued about the reports of abuse in Colombia after meeting Clara Giraldo, Ph.D. at the 2005 HDSA Convention. She had just finished an insightful dissertation on the caregivers in Colombia and showed me an unbelievable picture of one of the “jails” where they put person’s with HD (Phds) when they became uncontrollable. She told me that some Phds were locked up in these “jails” for very long periods of time. Of the two homes I visited that had a “jail” in them, neither “jail” had running water and only one had a toilet in it. There were supposedly many more homes with “jails” that I didn’t have time to visit. Clara also confided in me of seeing a Phd’s leg tied to a tree like a dog so he couldn’t get away.

The U.S. State Department still has travel advisories against traveling to Colombia because of narco-terrorist activities, including kidnapping an average of 40 U.S. citizens per month. Regardless, I was still determined to see for myself why they had to resort to such drastic and appalling measures of controlling and containing their loved ones with HD. Clara and her good friend, Patricia Uribe would accompany me while I visited families in Medellin and Juan de Acosta. Clara would serve as translator for me while Patricia would interview other family members we visited and enter their family history information into her laptop computer.

José Otoniel & Leovaldo – The Brothers “Grim”

When we arrived at José Otoniel’s humble home (without running water), I asked his spouse if she was still using her “jail” to put him in and she said “no.” Perhaps this was because she didn’t know us or perhaps it was because we had two of his sisters with us. However, when I asked to use the bathroom (to see for myself) she refused and said she needed to clean it first. She disappeared for about 10 minutes before returning with her husband all cleaned up and informed me that it was now okay for me to use the restroom.

Based on the new shiny padlock on the restroom/“jail” door I think our suspicions were confirmed as it appeared that despite what we were told she was still placing her husband José Otoniel in it frequently.

Unfortunately, José was very symptomatic and in the last stages of HD. When she appeared with him, she placed him in his wooden chair and proceeded to use a rope to tie his bare legs around the seat so he would not slide downwards (look closely at the picture to view the rope).

The drinking water used by José Otoniel and other HD families in upper Juan de Acosta was extremely polluted. However, it remains the only source of drinking, bathing and cooking water for hundreds of Phds and their At-Risk family members who each have a 50/50 chance of inheriting HD themselves.

The sign above the disgusting brownish-green drinking water says: “It is prohibited to bath, throw trash, or bath animals in this place.” (Like these things would make the water worse?)

NOTE: The home I stayed in for 10 days captured filthy dirty rain water in a cistern and used this as their main source of drinking, bathing and cooking water. Most babies and small children I saw were sick from being fed this putrid water.

When we arrived at Leovaldo’s humble one room home- no running water, no electricity and no outhouse, he was cooking lunch for himself and his 10 year old son outside. Chicken soup ala burned feathers and feet were the fare for the day. “Come and get it!”

El Indio- “Old Town Beggar”

”The lowest of the low, addled and desperate, shunned even by their own kind due to hideous disfigurements or some manner of insanity.” (Ian Thompson, Players Guide to Kaiin, Laws-Pelgrane Press, 2002)

El Indio used to be a well-respected man in town before HD started ravaging his brain.

Now he is cruelly forced to go door to door begging for food. Seven of his brothers and sisters live five minutes away but ignore him because tomorrow they may also begin the same symptoms he fights today.

His At-Risk cousin told me that she is confident that he will end up in the “jail” in her house very soon- the same “jail” where she was forced to keep his father until he died from HD several years ago.

Perhaps the cruelest of El Indio’s fates is that he must also watch his 22 year old daughter, Viviana Ariza Molina, continue to decline rapidly and die before he does, knowing that she inherited the Juvenile form of HD from him. The Juvenile form of HD begins much sooner than the adult-onset of HD and progresses much more rapidly. It began it’s insidious destruction of her mind and body over 3 years ago. Anyone who is touched by the piteous plight of these wonderful individuals should send money to:

Phil Hardt
125 N. 22nd Place, Unit 133
Mesa, AZ 85213

I made them a promise to return with more assistance before the end of this year and God willing, I am ready to do just that in October or November! Thank you for any help which you can give as they have so little and need so much. I hope to assist them with most of their most pressing needs that were identified on my initial trip, which include:

• Genetic Testing for HD Is Unavailable in Colombia
• Lack of Potable Water
• No Basic Medical Supplies Available (walkers, wheelchairs, etc.)
• Lack of Basic Sanitation Education
• Lack of Basic Reproduction Education (At-Risk Cousins are Marrying other At-Risk cousins now)
• Lack of Transportation to Visit Doctors
• Lack of ALL Medicines
• Lack of Sufficient Money to Purchase HD Medications
• Unavailability of Jobs or Training to Raise Standard of Living

I also want to thank those loving families who supported me financially and with clothing for my last trip. They helped bring smiles and hope to hundreds of faces on my first trip!

Phil Hardt 8/27/06 El Guerro de E.H. (“HD Warrior of Colombia”: Name given to Phil Hardt by Jorge Daza, MD while in Colombia HDWarrior@hdlighthouse.org)

Source: HDlighthouse.org

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