14ymedio, Lucía Oliveira, Holguín, 10 November 2023 — Putting a spoon in his mouth, combing his hair or writing are actions that Ramón has not been able to do for a long time. From being an active farmer, hauling oxen in the fields of the community of El Mijial, in Holguín, this Cuban, now 42, depends on his children and his wife for everything. An ataxia has been turning off his mobility and has condemned him to bed.
One day while he was in the field, Ramón felt that his arms did not respond to him. “I couldn’t keep the plow steady, but I thought it was just tiredness,” he tells 14ymedio. However, as soon as he returned home and told his wife about it, she became worried. In the town of El Mijial there are numerous cases of spinocerebellar ataxia type 2 (SCA2) and Cuba is the country with the highest concentration of patients in the world.
The worldwide prevalence of this type of ataxia is between three and five cases per 100,000 inhabitants, but in Holguín there are places like Báguanos where this figure reaches 129 per 100,000 people. Nearly 1,000 patients have been diagnosed throughout the country , grouped into more than 200 families, and there are about 10,000 descendants at risk of developing the disease.
Nearly 1,000 patients have been diagnosed throughout the country, grouped into more than 200 families and there are about 10,000 descendants at risk of developing the disease
When Ramón began to suffer continuous falls, he went to a clinic and the doctors, knowledgeable about the illness that afflicts some 43 people per 100,000 inhabitants in Holguín, quickly knew what it was about. “After confirmation of the diagnosis, follow-up consultations and work with the physiotherapist began,” Ramón’s mother details to this newspaper. “They also recommended exercises to do at home,” but the patient’s deterioration was rapid.
Although ataxia can occur after suffering a trauma, or come from damage to the brain for unknown reasons, Ramón’s is genetically inherited and manifests itself more strongly in communities where endogamy — intermarriage within a group — is highly present. The type that is mostly suffered in Holguín affects the cerebellum and especially damages balance and coordination of movements.
Along with the initial symptoms, Ramón began to have difficulties speaking and swallowing. His eyes also made involuntary movements and the lack of a wheelchair meant that his family could not take him to all the appointments. Added to this, in recent years, was the arrival of the pandemic and the deterioration of the Cuban Public Health system.
“It has been some years now, especially since Covid-19, that he has not received regular medical care nor do we see prospects for when the disease becomes even more disabling,” explains Ramón’s wife. Assistance to these patients is now provided by telephone and they are taught physiotherapy with household implements. “We feel abandoned,” summarizes the woman.
It has been some years now, especially after Covid-19, that he has not received regular medical care nor do we see any prospects for when the disease becomes even more disabling.
Although patients from Holguín represent 96.4% of those affected by hereditary ataxias in Cuba — and of them 95.6% suffer from its molecular form SCA2 — the majority of patients treated by the Hereditary Ataxias Research Center (Cirah ) from this province are foreign tourists.
Through the Cuban Medical Services Marketing Company (SMC), the center offers rehabilitation programs for international patients with neurodegenerative diseases. Among these services is the clinical and molecular diagnosis of different types of spinocerebellar ataxias, Huntington’s disease and amyotrophic lateral sclerosis.
International patients can opt for two complementary programs in addition to the diagnosis: one for evaluation and another for rehabilitation. Both include non-medical services such as transportation to and from the airport, hotel accommodation for the patient and a companion, as well as daily transportation to the clinic.
After two weeks of neurological, electrophysiological and cognitive evaluation, the patient has a prognosis and an action plan. Afterwards, they can enroll in a second two-month rehabilitation program that includes complete medical studies, several psychomotor rehabilitation sessions, magnetic and ultrasound therapies. All this, after payment in foreign currency.
For Ramón, who does not have a foreign passport or dollars, the outlook is very different. “Four years ago he frequently received therapies and psychological assistance, but currently the consultations have been much more spaced out, the therapies are not done regularly and we are only recommended physical therapy exercises to do at home,” details his wife.
Resources are prioritized for foreign patients since the current situation of the country requires economic entry over the expenditure of resources. A doctor and former Cirah worker who prefers to remain anonymous tells this newspaper that “resources are prioritized for foreign patients since the current situation in the country requires financial income over the expenditure of resources.”
In the municipality of Báguanos, the story of Lídice, 38 years old, is similar to what Ramón has experienced. After giving birth to her second child, one day she noticed that it was difficult for her to take the baby in her arms and hold it firmly. “I already knew what it was because in my family we have several cases,” she says. “My mother detected it in my eyes, she says that I had the same lost look as her sister, who died at 45 from ataxia.”
Knowing about the illness, however, did not prepare Lídice for what was to come. Her marriage could not withstand the physical deterioration that she suffered, she had to depend on her parents to bathe, take care of her two children, and feed her. In less than five years she went from being a very active and smiling housewife to staying in bed or in a chair almost every day. Her greatest fear is that one of her children has also inherited what she calls “the evil.”
Almost bedridden and with her parents retired, Lídice lives mired in lack of resources. An economic situation that prevents her from strengthening her health with good nutrition or occupational therapies: “Most of the time I can’t do them because I don’t even find the resources to follow them.” Although she can still communicate fluently, the young woman from Holguin fears that her ataxia will leave her locked in her own body.
Travelling, getting married, having children or carrying out a certain occupation are actions that are limited when the disease enters its phases of greatest physical deterioration
“I live each day very aware that tomorrow I may not be able to say a complete sentence,” she says. Reading on the Internet about other patients in other parts of the world and researching the disease on her own has helped her to foresee what is coming and try to prepare her children for her physical deterioration. “I almost can’t hug them anymore, but I can still give them a kiss.”
Suffering from ataxia also carries a great emotional burden. Patients not only have to say goodbye to the person they were before showing the first symptoms, but they are also forced to give up many of their future plans. Traveling, getting married, having children or carrying out a certain occupation are actions that are limited when the disease enters its phases of greatest physical deterioration.
For families, the psychological and economic burden is also immense. With a patient bedridden or unable to move, the closest relatives feel overwhelmed by household chores and frustrated by not being able to get everything from disposable diapers to a variety of foods to keep them comfortable and cared for.
In Báguanos, Lídice no longer has official treatment. “My children have made me balls and a stool so that I can continue exercising my hands and I also try to maintain the movement of my feet,” she says. “Even though it’s hard for me, every day I try to do some exercise sitting in the chair and keep my head busy with plans.”
Her dream: that a treatment for spinocerebellar ataxia type 2 is discovered or that, in the absence of a cure, “the Center will once again care for Cuban patients and we will not be as abandoned as we feel now.”
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