Nearly about 40 people in Spain and 2,000 people in the world who suffer from Central Congenital Hippoventilation Syndrome, known as Ondine Syndrome, a rare disease causing to "forget" from breathing when sleeping or 24 hours a day, so they need a ventilator to maintain their life. Only since 2003 is diagnosed the mutation in the PHOX2B gen that regulates autonomic activities, SNA causing the Syndrome. The investigation is VITAL for a correct diagnosis (still unknown disease) and on time.
Study to be made among patients of different ages who will be subjected, under medical and therapeutic control, to previously selected exercise sessions, to verify whether physical activity compromises the gas exchange when breathing and in what way it affects patient's general conditions to conveniently adapt the mechanical ventilation they need to breathe during their sleeping periods.
Pubblicato il
06/02/2025
Data di pubblicazione
25/01/2025
Tipo di gruppo
Altri
Settore:
Aiuto ai pazienti
Persone con disabilità
Ricerca
Paese:
Spagna
Regione:
Málaga
Copia incolla la URL
https://www.teaming.net/sindromeondine-norespirarcuandoduermes
Teaming Manager
06/02/2025 12:31 h
En nuestra Asociación hay una família que lo está pasando especialmente mal por la situación de su hijo de 20 años afectado por el síndrome de Ondine y de un TEA profundo con componentes de agresividad, El centro de dia al que asistía han notificado a los padres que no pueden seguir atendiéndole por sus particularidades. Los padres han iniciado una campaña mediática para conseguir que lo admitan en un centro/residencia a pesar del respirador que le es imprescindible para seguir con vida y que ahora es un handicap para su admisión - Feb. 6 de 2025
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