Puerto Rico is currently one of the countries with the highest prevalence of this disease.
Dr. Ángel Chinea, neurologist and creator of the Multiple Sclerosis Foundation. Photo: Archive of the Journal of Medicine and Public Health.
The Multiple sclerosis or MS, is a disease diagnosed more frequently between 20 and 40 years of age, this autoimmune pathology affects the brain and spinal cord -central nervous system- and with a higher prevalence in women compared to men.
Puerto Rico is currently recognized as one of the countries with a high prevalence of this disease, this is due to the fact that by law a registry was created that guarantees that all those cases are counted, allowing greater control, guaranteeing safety to all patients, but making incidence figures increase.
“We started with 30 cases, but in the latest numbers, there are 90 cases out of every 100,000 people, and when women are stratified in age increases between 35 to 44 years, we see that they reach 200 cases out of every 100,000 inhabitants,” he says in Dr. Ángel Chinea, neurologist and creator of the foundation of Multiple sclerosis“The numbers of new cases, weekly from 2 to 3 new cases, an average of 8 to 10 cases per month”, in an exclusive interview with the Journal of Medicine and Public Health.
One of the errors that patients initially make after a diagnosis is to search for information on the internet, believing that this disease has standardized symptoms, but this is not the case, since each patient presents completely different symptoms related to the stage in which they are diagnosed. .
Currently, in Puerto Rico, various studies focused on this pathology are being developed, and Puerto Ricans have the support of the foundation of Multiple sclerosis of Puerto Rico, which creates and has support spaces for all those patients who struggle with this condition within the Island.
It should be clear that before starting any type of clinical study, evaluative tests are carried out, as well as during the time it lasts and even after finishing it, in order to constantly monitor in order to be able to evaluate the condition of these patients, taking into consideration what is the experience that the patient has with the study and how the process impacts their quality of life.
The most important advance that science has had against this condition, Viviana Martínez, coordinator of clinical studies, highlighted that they are, “phase three studies, since medications have always been made to prevent progression” and right now the investigations directed not only for this, “but to find a remyelination factor, to improve the damage already caused by the disease in the patient.”
Participation in clinical research studies helps to understand more about the condition and also how the quality of life of patients can be improved, as well as improve the pharmacological contribution, to achieve greater benefit in those patients who live with multiple sclerosis.
Inside of foundation There is great support for the community created from the patients who live with this condition on the Island, creating an active participation of all the spaces and facilities created by the institution, says Lourdes Fernández, executive director of the foundation of Multiple sclerosis from Puerto Rico, “we currently have about 3,000 patients registered, throughout the island, we have aid programs where we offer equipment, and the wellness program”
Main challenges of clinical studies
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Genetic factors that allow understanding the individualized characteristics of each patient.
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Orientation of the patients, in front of the studies (explaining them everything about the monitoring that they will have).
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Identify markers of this disease to improve diagnosis.
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To improve the prognoses that the treatments could have.
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Improve the markers of the different responses to the different current and new drugs.
Inside of foundation of Multiple sclerosis of Puerto Rico, one of the biggest challenges is to continue offering the support they give to patients, with the different teams they may need depending on the characteristics of their diagnosis and the evolution of the disease, both as facilitators in emotional processes and elements such as wheelchairs, canes, chairs, walkers.
The foundation It has a collaborative agreement with the Ponce University of Medicine, and a psychological help program for patients, understanding the different emotional and psychological processes that the diagnosis as such entails and the uncertainty of treatment.
“The future is very encouraging, in the coming years we will have the necessary tools to be able to combat the disease,” concludes Dr. Ángel Chinea, calling for a positive mentality about the future of science in the face of this disease.
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