CUN and CIMA are studying the use of probiotics to improve metabolism in patients with porphyria.
Hospital of the University of NavarraAnd CIMA University of Navarrainitiated a study (PROPAI) on use of probiotics and postbiotics orally to improve imbalances in glucose metabolism in patients with acute intermittent porphyria, a rare disease characterized by attacks of abdominal pain, mental changes and neurological impairment.
After experimenting with preclinical models, the researchers aim to go further and offer “therapeutic alternatives” to these patients “who suffer from significant changes in carbohydrate metabolism that cause insulin resistance, prediabetes and diabetes.” “In studies done on mice, we noticed that certain probiotics could normalize these changes. Our goal now is to transfer these results to humans,” explains Isabel Solares, internist at the University Hospital of Navarra and director of the consultation, in an interview. press release on rare diseases.
This study represents “another step in development of innovative precision treatment methods for people suffering from this hereditary disease.” “At CIMA we are committed to this type of treatment using therapeutic RNA for diseases such as porphyria. In particular, in our laboratory we tested the therapeutic efficacy and safety of messenger RNA administration using different experimental models of acute porphyria,” explains Antonio Fontanellas, Principal Investigator of the Hepatology: Porphyrias and Carcinogenesis research group at CIMA.
The name porphyria combines seven rare diseases, most of which are hereditary, causing defects in the function of proteins involved in the metabolism of heme, an essential substance produced in the liver. Despite the low incidence and lack of cure for porphyria, research has led to advances in treatments that “significantly improve the quality of life of these patients, their families and caregivers.”
“Porphyrias are chronic diseases that can affect various organs and also have a significant psychological impact and impact on quality of life,” explains Delia D’Avola, a specialist in hepatology and internal medicine at the clinic. An adequate therapeutic approach to the disease requires the work of “an integrated multidisciplinary team capable of preventing and treating acute outbreaks of the disease, and improving the quality of life of these patients,” he continues. In the context of rare diseases, this collaboration is “even more important given the limited resources and small patient numbers that require pooling of clinical data, results, and efforts.”
WORKSHOP “EMOTIONS AND ART” WITH AN INTEGRATED APPROACH TO THE PATIENT
Clinic of the University of Navarra in collaboration with CIMA and Spanish Porphyria Associationorganized the first Emotions and the Arts Masterclass, an initiative aimed at “addressing the emotional and social sphere of people with porphyria, creating a space for self-expression and support for both patients and their families and carers.”
As Isabel Solares emphasizes, “Many patients with a minority disease experience feelings of loneliness, helplessness and misunderstanding. Through events like these, we try to help them develop networks of emotional and mutual support.”
Fontanellas emphasizes that “we are developing a series practical seminars focus on various topic areas to stimulate social interaction and contribute to significant improvements in the physical and psychological well-being of patients with porphyria and their immediate environment, as we recognize the importance of relationships in improving the quality of life of those suffering from this rare disease.