Voices of AHP is a podcast series aimed to raise awareness of Acute Hepatic Porphyria (AHP) amongst patients, healthcare professionals (HCPs) and the general public.
It highlights what it is like to live with this chronic rare disease and features people living with AHP, their caregivers and members of patient advocacy groups who share their experiences and tips for others. Visit Livingwithporphyria.eu (http://Livingwithporphyria.eu) for more information.
This podcast was produced and funded by Alnylam Pharmaceuticals and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further information and advice. The impact of the symptoms of AHP described in this podcast are based on the speaker’s personal experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms.
Job Code: AS1-CEMEA-00199
Recording Job codes:
AS1-UK-00002
AS1-DEU-00163
Date of Preparation: March 2021
Publisher
Voices of AHP
Category
health & fitness · health & fitness · health & fitness
I detta avsnitt av Röster om AHP delar Maria sina erfarenheter av att leva med akut intermittent porfyri (AIP) med Ingela från Riksförbundet Mot Porfyrisjukdomar (RMP), som också lever med sjukdomen. De diskuterar sina erfarenheter av att leva med AIP, hur de hanterar symptomen, samt den genetiska sjukdomen och hur det är att prata med familjemedlemmar om att testa sig för den.
Denna podcast initieras och sponsras av Alnylam Pharmaceuticals och är endast tillgänglig för allmänheten i informationssyfte. Innehållet ska inte användas för diagnostisering eller behandling av hälsoproblem och sjukdomar. Den är inte avsedd att ersätta konsultation och råd från sjukvårdspersonal. Konsultera din vårdgivare för mer information och råd. Effekterna av de symptom som diskuteras i podcasten är baserade på deltagarnas personliga erfarenheter och perspektiv på hur det är att leva med AHP, beskrivna med deras egna ord. Alla som lever med sjukdomen upplever inte samma symptom.
Besök www.livingwithporphyria.eu/sv (http://www.livingwithporphyria.eu/sv) för mer information.
Job Code: NP-SWE-00013
Podcast Job Code: NP-SWE-00011
Date of Preparation: February 2022
10 Feb 2022
3: Rosa María & Verónica
En este episodio de la serie de podcast con pacientes de Voces de la PHA, Verónica comparte su experiencia de vivir con Porfiria Aguda Intermitente (PAI) con Rosa María de la Asociación Española de Porfiria (AEP) quien también vive con PAI. Hablan sobre de los signos y síntomas iniciales de Verónica y su progresión, así como de su vida desde el momento en que fue diagnosticada. Tras su diagnóstico, Verónica ha decidido involucrarse con asociaciones locales y ayuda asimismo a concienciar sobre la PAI.
Este podcast ha sido promovido y financiado por Alnylam Pharmaceuticals y está disponible para el público únicamente con fines informativos; no debe utilizarse para diagnosticar o tratar problemas de salud o enfermedades. No pretende sustituir la consulta de un profesional médico. Por favor, consulte con su especialista para obtener más información y asesoramiento. El impacto y vivencias de los síntomas de la Porfiria Hepática Aguda descritos en este podcast se basan en la experiencia personal del testimonio de quien convive con esta enfermedad, descrita con sus propias palabras. No todas las personas que viven con esta enfermedad experimentan los mismos síntomas.
Job Code: NP-ESP-00075
Podcast Job Code: NP-ESP-00076
Date of Preparation: November 2021
7 Apr 2021
2: Sabine, Agnes und Mechthild
IIn dieser Folge des Podcasts „Stimmen zu AHP" spricht Sabine von Wegerer vom Berliner Leberring mit Agnes, die mit AHP lebt sowie ihrer Mutter Mechthild über Agnes' erste Symptome, die Diagnose und den Alltag mit der Krankheit. Agnes erzählt, wie ihre Liebe zur Musik sie positiv gestimmt hält und wie sie ein Gefühl der Erleichterung spürte, als sie wieder Geige spielen konnte.
Dieser Podcast wurde von Alnylam Pharmacuticals produziert und finanziert und steht der Öffentlichkeit nur zu Informationszwecken zur Verfügung; er sollte nicht zur Diagnose oder Behandlung von Gesundheitsproblemen oder Krankheiten verwendet werden. Er ist nicht als Ersatz für die Konsultation eines Arztes gedacht. Bitte kontaktieren Sie Ihren Arzt für weitere Informationen und Ratschläge. Die in diesem Podcast beschriebenen Auswirkungen der AHP-Symptome beruhen auf den persönlichen Erfahrungen und der Perspektive der Sprecherin, die mit dieser Erkrankung lebt und sie in ihren eigenen Worten beschreibt. Nicht alle Menschen, die mit der Krankheit leben, werden die gleichen Symptome erfahren.
Job Code: AS1-DEU-00173
Date of Preparation: April 2021
7 Apr 2021
1: Sue and Alicia
In this episode of the Voices of AHP podcast, Alicia shares her experience of living with Acute Intermittent Porphyria (AIP) with Sue from the British Porphyria Association who also lives with AHP. They talk about Alicia’s initial symptoms and the journey to diagnosis. Since her diagnosis, Alicia has worked to increase awareness of AHP and has met other people living with porphyria around the UK.
Acute hepatic porphyria (AHP), a subset of porphyria, refers to a family of rare genetic diseases characterised by potentially life-threatening attacks and, for some people, chronic debilitating symptoms that negatively impact daily functioning and quality of life.1,2
This podcast was initiated and funded by Alnylam Pharmaceuticals and is available to the public for information purposes only; it should not be used for diagnosis or treating health problems or disease. It is not intended to substitute for consultation with a healthcare provider. Please consult your healthcare provider for further information and advice. The impact of AHP symptoms described in this podcast are based on the speaker’s personal experience and perspective of living with the condition, described in their own words. Not all people living with the condition will experience the same symptoms.
1. Anderson KE et al. Ann Intern Med. 2005 Mar 15;142(6):439-50.
2. Balwani M et al. Hepatology. 2017 Oct;66(4):1314-1322.
Job Code: AS1-UK-00004
Podcast Job Code: AS1-UK-00002
Date of Preparation: December 2020
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