Patients and family members with porphyria from different countries met this afternoon at Cima University of Navarre participate in a meeting focused on strengthening your self-esteempersonal development and well-being.
The day offered interactive workshops on nutrition, breathing, relaxation and exercises to improve vitalityas well as artistic activities that encourage patience and well-being through the enjoyment of the present moment.
The event, organized in collaboration with the University Clinic of Navarre ended with an art exhibition with works contributed by the participants, a creative initiative to raise awareness of rare diseases and its impact on patients and their families.
Porphyrias are minority or rare genetic diseases caused by a deficiency in the synthesis of heme, a key factor for functions such as oxygen transport, energy production in the cell or waste elimination in the liver. Its diverse and debilitating symptoms have a significant impact on the quality of life of those who suffer from it.
From chaos to positive uncertainty
As explained Dr. Antonio Fontanellas, researcher of the Cima Porphyrias Group of the University of Navarra“When a person is diagnosed with rare diseaseUncertainty invades your mind with doubts, anguish, fear or anxiety. With these workshops, we seek to transform this chaos into positive uncertainty through art, breathing, exercise and appropriate nutrition. These activities promote socialization and allow us to take advantage of the resources we have to overcome difficult times.
“These workshops are an extraordinary opportunity to share moments, experiences, something very important in patients with these diseaseswhich on several occasions they feel isolated and misunderstood“Initiatives like these workshops unite us,” says Fide Mirón, president of the Spanish Porphyria Association.
The event is the act prior to the International Congress of Porphyries and Porphyrins which will be held in Pamplona from September 21 to 25, where nearly 400 professionals will present the latest advances in the diagnosis and treatment of these diseases. “Without research, there is no future. We must promote the development of scientific studies so that our disease is better known and treatments are coming as soon as possible,” concludes Fide Mirón.
