Víctor Martín, aged 41 and suffering from the condition, appeals to others affected.
Santa Cruz de Tenerife, APR. (Press Europa) –
The Sadela 2024 initiative, spearheaded by the Teidela Association and the Cabildo de Tenerife, has provided support to 31 patients living with this illness during the latter half of last year, amounting to a total of 6,202 hours of home assistance.
This information was shared with the press by the Minister of Social Action, Águeda Fumero, and the president of the Association, Marcelino Martín, who emphasised that this initiative represents a “model” and an “exemplar of best practices” in advancing the national law regarding ELA.
This programme serves approximately half of the diagnosed ELA patients on the island, according to the association’s estimates, and also includes 138 hours of psychological support, 137 hours of logotherapy, 1,100 hours of physiotherapy, 28 hours of respiratory physiotherapy, and 63 hours of nursing care.
In total, 15 women and 16 men are being supported, with half of them lacking any governmental assistance, and the most frequent age range being between 60 and 80 years.
Víctor Martín, a 41-year-old karate instructor and ELA patient, revealed that his condition is genetic—his mother, a founding member of the association, also suffered from it—and he was diagnosed in October after almost two years of tests due to weakness in his legs.
He has urged those affected not to experience “fear” and to seek assistance from associations that provide “indispensable work” which “significantly aids the patient” in “lifting that burden.”
He also mentioned that he continues to practise wheelchair karate—he is a referee—because it helps him escape from the challenges posed by his illness.
“My mother had ELA and passed away in 2018, and during that time, there was no support available. Therefore, I understand intimately the burden on the family. For instance, my father was the primary caregiver and effectively halted his own life to care for my mother,” he said with emotion.
Marcelino Martín remarked that Teidela was founded in 2021 to “enhance the living conditions of patients and their families” because “the progress of the illness largely unfolds within homes,” with relatives forced to take on roles as “nurses, advisors, and caregivers.”
He noted that this initiative is “courageous” given the “challenges” faced by the public sector in formulating a service portfolio, to the extent that it was “extremely complex” to synchronise them, especially considering that the circumstances vary greatly.
“Not everyone has a well-structured family unit, not everyone has support, not everyone is of the same age; there are residents from other nations here who are isolated, and there are older individuals who find their familial network to be quite limited,” he stated.
He highlighted that receiving a diagnosis “shatters” the individual and their family, leading to a “fracturing” of the family unit. “Some individuals accept it, while others do not; some desire to fight, and others wish to give in. This is where the perception of each individual comes into play,” he elaborated.
The councillor, Águeda Fumero, has committed to continually enhancing the coverage of project services, as they are always “learning”—the budget for this year stands at 500,000 euros—and she underlined the “legacy” left by the association’s founder, who, through “effort, perseverance, and generosity,” aimed for people with ELA to receive guaranteed support.
Calls for Funding for National Legislation
Regarding the delay in implementing national legislation, Victor admitted that the financial aspect “is slow,” yet he acknowledged that processes have been expedited. Marcelino Martín, however, has urged that at the very least, funds and services should be allocated to the most critical cases, particularly those of patients requiring tracheotomy.
“It is the utmost priority,” he remarked, explaining that 24-hour care can cost around 100,000 euros annually for a family.
In his view, “this is an amount that could pose a significant challenge for public administration. While we are in a phase of determining who will take responsibility, we want to clarify that it is one party or another who must accept certain responsibilities, as other administrations are already doing.”
