HD families – Factor H
First day with Factor-H in Colombia.
I had the pleasure of meeting children, families and patients. All children have a connection with Huntington and are at risk.
On the menu for this « Xtrem Camp » day, physical activities for children to promote inclusion through sport and the importance of being active.
It was a beautiful and very emotional day. Meeting all these families and children living with this disease that haunts them touched me a lot. We understand each other, we support each other and above all we share because we are a big family, we are together in the face of Huntington’s disease. The Huntington family has no borders and we are all united by very sad life stories.
Huntington’s disease is highly prevalent across many communities in Latin America. Geographical isolation and the individual histories of these communities have contributed to a prevalence of the disease that in some cases is 500-1,000 times higher than in other regions.
The consequences of this high prevalence, and the poverty conditions in which these communities exist, have led to a situation that requires immediate attention.
Poverty, ignorance and disease are a terrible combination that leads to inadequate healthcare, nutrition and living conditions.
I am here all week with Factor H association, in the presence of Nacho, Roger and all the volunteers.
Thanks to Factor-H for their contribution to the Huntington community and particularly here in Colombia.
In 2012, Factor-H was created to help to improve the quality of life of people affected with Huntington disease living in extreme conditions of poverty and social neglect. They work with communities in Latin American most affected by this terrible disease. They want to change their conditions by providing basic assistance and provide resources for to improve their current living conditions.They also work to help new generations of at-risk individuals grow up.
Day 2 Factor – H / Universidad Metropolitana
Conference Factor-H and Huntington Disease at University « Metropolitana ».
Ignacio (Nacho) Muñoz Sanjuan :
-Work in latinoamerica
-Application « Cognoceme »
-Anticipation as a characteristic of the disease
-The future of new generations
-The impact on family
Roger Cachope :
-Introduce Huntington Disease
-Emotional disturbances in HD
Dimitri Poffé :
Exploreforhuntington project creator – Ambassador Huntington Disease
-Biking all around latin america by bike to raise awareness and funds for HD
-Meeting families, patients, doctors, Huntington network and making connections
-HD personal history
Deicy Echeverría Ripoll and her family – Saco, Colombia
Deicy lives at risk with Huntington’s disease. Her Dad died of the disease and she therefore has a 50% chance of inheriting the defective gene.
She lives with her daughter and family in the village of Saco. Her two sisters are also at risk of the disease.
Here we work as a family, the mother and the 3 daughters sew clothes every day that they sell in Barranquilla. (A pair of shorts is sold for 2000 pesos, 0.54 USD) It’s definitely not enough to live and educate her daughter and they try to survive.
Deicy is also a volunteer for the Factor-H association and she dedicates her free time to help the Huntington patients who live in her village.
She is a very courageous woman and an example for her daughter.
Thank you so much Deisy for your contribution in the Huntington community, you’re amazing !
Nelson – Saco, Colombia
Nelson has Huntington’s disease for a few years. He lives in the village of Saco.
He is already in a stage where he can no longer speak, barely walk, difficulty eating and walking. He spends all his time sitting on a chair.
What is very difficult is that he lives in precarious conditions. Huntington’s disease associated with poverty make things very complicated for patients.
Here there are no doctors to help him and he has no treatment. Fortunately, his niece, Julieta (his dad also has the disease), takes care of him.
Nelson is very brave and every day he fights against the monster of Huntington’s disease.
Bravo Nelson, you are impressive.
Nora and José – Piojo, Colombia
Nora and José are siblings, live in the village of Piojo and have both Huntington’s disease.
They inherited the deficient gene from their dad. Nora is 35 years old and has been ill for 4 years. She is still good, speaks and understands perfectly. Of course she has a lot of involuntary movements but she is still able to do many things.
What catch my attention about Nora, it’s her sympathy, despite the disease, she always has a smile and is very kind.
Her brother, José, is in a much more advanced stage of the disease, he has been 40 years old and symptomatic for 8 years. He is already in a wheelchair and can not talk, walk and fall regularly. José is tall and strong, which makes the task even more difficult when it falls to lift it.
José and Nora live with their mom, who takes care of both children.A very touching and inspiring story.
My greatest respect for this family whose Huntington disease has been ravaging.
Maria Orladis – Juan de Acosta, Colombia
Maria is 53 years old and has Huntington’s disease for 7 years. She is already at an advanced stage of the disease.
The movements are very strong, she lost a lot of weight, can not talk anymore and barely walk.
Maria lost a child in a car accident. She has two other children, one works in Barranquilla in a mattress business and her daughter already has a child and is currently pregnant.
The disease literally devored her, she is in a really bad condition and it’s very sad.
Don’t give up Maria, we are all with you and your kids.
Freddy – Valledupar, Colombia
Freddy has 48 years old and living with Huntington disease since 15 years. He worked as a security guard.
He is already in an advanced state of illness and spends days lying in bed.
Freddy has a lot of involuntary movements and eating disorders. He can no longer speak, has severe cognitive and psychic symptoms.
Thank you so much Freddy to open your door, it was a pleasure to meet you. I feel so sad because I’d love to help all those patients but I can’t do anything and It’s very frustrating.
Be brave Freddy !
Edgardo – Valledupar, Colombia
Edgardo is 51 years old and has had Huntington’s disease for 5 years.
He is also an HIV carrier. A very difficult situation. Being sick with huntington is already very complicated but add another disease to that and it’s a real hell.
Edgardo worked as a designer. He is still in the early stages of the disease and has few involuntary movements.
In addition, he expresses himself very clearly and understands everything.
It was a pleasure to meet Edgardo and we had a good laugh. I am aware that I cannot save these people, but to make them smile even for a moment and show them that we are thinking of them, that they are not alone, I think that is very important. I can see in their eyes how happy they are to be interested in them.
Thank you so much Edgardo.
Leila – El Díficil, Colombia
Dilia Oviedo Oviedo is 85 years old. She had 12 children. One was stillborn. Of the 11 children that survived to adulthood, 6 have already died from Huntington’s disease. 2 more are currently in late manifest disease. Her husband died in the early 90s, and now a future generation is beginning to show symptoms. One of her grandchildren already died of HD. She has 27 more, most of them at risk…
Dilia is a remarkable woman. We first met her in 2013, and hers was one of the first large Latin American families we ever visited. She lives in a family compound in the outskirts of a small town called “El Dificil”, in Northern Colombia (Magdalena State). As each kid got progressively sick, they all moved in with her.
Most of her daughters were abandoned by their husbands, and they relocated too to be under Dilia’s care. Although she has plenty of experience caring for HD patients, it is becoming very hard for her to manage. Her family is poor, and receive little government support.
At the time, she lacked access to fresh water, so we provided a large water tank to enable her family to work the land.
She represents the caregiver, the woman who dedicates her life to caring for her family, and whom, against all odds, manages to bring dignity to those dying from Huntington’s disease. In 2017, Dilia and her daughter Maribel, who assists her dying siblings, traveled with Factor-H to the Vatican to meet Pope Francis.
The disease spreads throughout families in rural areas where the lack of support and frank ignorance about the disease perpetuates a cycle of disease, fear and poverty. Women particularly need to be educated of their options and rights so that they can make informed reproductive choices.
Their story was featured in the documentary film Dancing at the Vatican.
Johanna – El Díficil, Colombia
This visit made me very sad, Johanna lives in conditions of extreme poverty like many people here in El Dificil.
She is a 33-year-old mother who lives alone with her children and has been sick with Huntington for 4 years.
In her house, there is no floor, no shower or toilet, there is just a room with a bed and a stove.
She can no longer cook because of illness so she has to eat out.
Gwladys, Gámez de Ávila – Santa Marta, Colombia
Gwladys has 75 years old and living with Huntington Disease since 17 years.
She inherited the gene from her dad and is already in an advanced stage.She has a lot of movements can barely speak and lost a lot of weight. It’s very sad to see her like that.
Gwladys has 6 children, they’re all at risk even tho they still didn’t get any symptoms.
The family do their best to help her and they all feel desperate. Unfortunately they don’t have any information about the disease and she doesn’t have any treatment.
This is a typical Huntington’s disease situation. Lack of information, isolation, no specialist who knows the disease and the transmission of the disease over several generations.
It’s very sad especially with poverty. They live in precarious conditions with few means and need help.
Jesús Carmona – El Algarrobo, Magdalena
Jesús has only 10 years old and already living with Huntington Disease since 4 years.
He has speech disorder, lack of coordination, difficulty to walk and muscles rigidity.
Unfortunately he can’t no longer go to school because of his symptoms and as well the others kids are laughing at him.
Jesus inherited the gene from his dad, Miguel Carmona, who he’s 38 years old and living with huntington since 7 years.
Her mother, Elizabeth Cabarca, has 36 years old and had 9 children with different fathers.
They’re 4 children from the same dad, Miguel, who has huntington. José Miguel, James, Jesús and their sister, Maria Carmona.
Maria has already passed away at the age of 13 years because of Huntington Disease.
The two others siblings, José Miguel and James, are still asymptomatic.
This family is living in extrem poverty and definitely need help. If you want to contribute and help them, please, follow the link below :
Enrique De Avilla Sierra – El Algarrobo, Magdalena – Colombia
Enrique has 46 years old and has huntington disease. He developed the first symptoms 7 years ago.
Her mother (pics above) passed away 4 years ago from the disease, she was 54 years old.
Enrique has 10 siblings and only one sister got the disease until now.
He lost his daughter who sadly died from an accident in a river, she drowned and was only 18 years old.
Enrique is living alone with the disease, he only has a sister who take care of him sometimes.
Maria Alejandra Carmona – El Algarrobo, Magdalena – Colombia
Maria is only 21 years old and has been living with Huntington’s disease for 5 years already.
She is the mother of 3 young children and living alone taking care of her kids.
They’re living in extrem poverty and do not even have access to basic necessities. She has a house completely empty without any chairs, tables or anything. She only has a broken fridge and somes stuff to cook.
Maria inherited the Huntington Disease gene from her mother, Jenny who passed away at the age of 32.
They are 6 children of the same mother but some have a different father.
Her sister, Sharith, who’s 17 years old, has already declared the disease as well.
Maria had her first child at the age of 15 and with the disease had to leave school.
Alex García Herrera – El Algarrobo, Magdalena – Colombia
Alex is the brother of María Alejandra but they’re not from the same dad. They inherited Huntington Disease form their mother.
He’s only 18 years old and already living with Huntington since 4 years.
He has speech disorder, muscle rigidity, lack of concentration, difficulty to walk and somes psychiatric symptoms.
Living in a farm, he started school later than others kids and today with the disease, he’s out of school.
Thanks to factor-H, we realized Alex’s dream of having a red colored bike. He can now ride his bike around the village and having some physical activity.
What we realize in these villages is that people have a lot of children and more with different spouses. As a result, the disease is transmitted to a large number of children and mixes in different families.
They live in conditions of extreme poverty and don’t have anything. No doctors, no medicine and no information about the disease.
People do not know what the disease is, the genetic and hereditary part and because of this continue to pass it without even understand.
Likewise for children at risk, they have very little information about the disease and generally do not know that it is hereditary.
Medellín – Colombia
I had a good time in Medellin !
I met beautiful people, visited the city , had a interview with « Tele Antioquía » and participated to a bike ride with haemophilia foundation.
In Medellin, there’s a lot of things to do :
-Laureles, Poblado, Plaza Botero and city center
-Museo de Antioquía
-Metro Cable to Parque Arvi
-Santo Domingo, biblioteca España
-Guatapé, El Peñol
-El Castillo museo
-Plaza Minorista Market
-Museo de Arte moderno
-Mercado del río
It’s a very beautiful city surrounded by mountains and the weather is good even tho we’re in rainy season and it rained every day.
Now I’m traveling around the coffee area in the mountains and the landscapes are wonderful.
Next step : Cali, the world salsa capital
San José, Caldas
Today I had a fabulous encounter that I wanted to share with you.
I was having my lunch and started to talk with people. They asked me the basics questions « Where are you from ?, What are you doing here ? » So I talked about my bike trip and my project « Exploreforhuntington ».
We got to know each other and I learnt that they actually own a coffee farm here. They invited me to visit the coffee plantations and share with me their work. Besides that they even paid for my lunch, such wonderful people ! Thank you so much !
I had the pleasure to spent all the afternoon with them and it was a beautiful experience. I’m actually right in the middle of a coffee region here in Colombia and we can see entire mountain section full of coffee plantations.
In this farm, they produce limon, coffee and plátano. They export all the coffee in Europe or United States. They showed me absolutely everything and teach me about coffee, it was really interesting.
Colombia is famous for his coffee and even has the reputation to have the best coffee in the entire world. The secret ? A unique climate and excellent varieties. Many people depend on coffee here, it’s a huge business.
What I like about traveling by bike is discovering remote villages. I passed by « Fredonia » a few weeks ago, a beautiful village near Medellin.
Many times people worry about my safety, being on my bike all day and living outside at night in a tent.
But the reality is that outside the cities it’s really quiet, people live from agriculture, in villages and are often very welcoming to me. So far, I have never felt insecure at all.
Even tho I’ve got sick all week, I had a really good time visiting Popayan.
Capital of the department of Cauca and located in southwestern Colombia. It has a population of 318,059 people and culminates at 1760 meters above sea level.
What I particularly like here is that it’s not too big as a city and not so small as a village, it’s the perfect in-between.
Besides that, Popayan has a lot of culture, a wonderful architecture and walls painted in white giving a unique atmosphere.
The weather here is perfect as well, it’s not very warm although we’re in rainy season and it rains everyday. But it makes me feel so good to get some fresh air.
It is also known as the « white city » due to the color of most of the colonial buildings in the city center, where several churches are located, such as San Francisco, San José, Belén, Santo Domingo, San Agustín, and the Catedral Basílica Nuestra Señora de la Asunción, known locally as « La Catedral »
Popayán has been home to seventeen Colombian presidents, as well as noted poets, painters, and composers.
The University of Cauca, one of Colombia’s oldest and most distinguished institutions of higher education, is located here, so Popayán is also known as the « University City ».
An earthquake hit the city on march 1983 which destroyed much of the city.
Though many were rebuilt and repaired, the heart of the city still has ruins.
In 2005, Popayán was declared by the UNESCO as the first city of gastronomy because of its variety and meaning to the Colombian culture.
NoI am now in Ipiales, the border town with Ecuador.
Here are the figures for Colombia: I traveled 1886km and 20,560m of elevation gain, in total from Mexico I am at 4903km and 56,250m of elevation gain.
As you can see, it’s not really the distance that’s impressive, but rather the elevation gain. I spend my time climbing and I assure you that it’s very hard physically, I exceeded my limits many times.
I had the honor of participating in the election of the new Colombian president. For the first time in history a left-wing president was elected, Gustavo Petro.
These last few weeks have been particularly difficult because I have had a series of problems.
First I had an intestinal infection from a parasite and at the same time I had an inflammation of a muscle behind my shoulder blade.
On the flip side I had several problems with the bike, when I arrived in Pasto I noticed that the screws that fix the luggage rack were cracked.
No bike shops could help me so I had to hire an industrial welder, hope it holds up.
I also took advantage of being in a city to have the bike serviced and the brake pads changed.
The problem is that they couldn’t adjust my brakes and they broke a part. To apologize, they completely changed my front brake.
I took the road back to Ipiales, only 80km from Pasto and I lost the brake on the way.
Arrived at Ipiales, so I had to change the brake again.
The weather has also completely changed, now it’s cold (I’m over 3000m above sea level) and it rains every day. So I discovered the joys of being soaked to the skin, muddy and completely freezing on the bike while continuing to climb the mountain, endless slopes.
Finally, there are currently many protests in Ecuador, the state has declared a state of emergency and they have blocked many roads.
I therefore hope to be able to cross the border soon, although most people strongly advise me against it.
Anyway, I have no choice, my Colombian visa expires on June 31.
Apart from that, the landscapes here are wonderful, I’m surrounded by mountains and I only cross waterfalls, rivers and very impressive mountain ranges, it’s really beautiful.
It’s with a lot of pain that I announce you the death of Nelson Echeverría.
I write this post in his memory and for his family for whom I feel my sincere condolences.
Nelson was living with Huntington’s disease and was already in late stage.
Lately other health problems have been added, in particular tuberculosis, and he has not held up.
I met Nelson and his family here in Colombia and I can tell you they are wonderful people.
Unfortunately, they live with very few means and it is very sad.
Nelson didn’t even have a bed to rest on. He spent his days sitting on a wooden chair.
Malnutrition, lack of hygiene linked to poverty, not being able to consult health professionals, isolated because they live in remote villages, these are the daily lives of many people here in latin america.
So imagine with Huntington’s disease on top of that and it’s a real nightmare for those families.
The octopus Huntington won again, it took Nelson like it took away my father in the past and thousands of other people.
We are facing an incurable, rare and devastating disease, which destroys the daily life of many families, generations after generations (hereditary and genetic disease).
We need help and in honor of Nelson and the entire Huntington community, I invite you to share, talk and encourage people to help us.
The Factor-H association is doing a remarkable job here but lack of means, we must show solidarity and help these people.
I think that’s the only way to deal with Huntington’s disease, solidarity.
We have no treatment, no cure and are helpless in the face of this terrible disease.
The only thing we have left is to support each other, no matter our differences, we are all Huntington.
I send my sincere condolences to all his family and I will fight for you, that I promise you.
You will always be with us Nelson, rest in peace my friend, I love you ❤️
If you want to help us, please follow the link below and contact Factor-H organization.
Thank you so much for your help.
LAST UPDATE : Nelson sorted out negative from Tuberculosis but had COVID-19