Votes for PAH – Listen to the real experiences of people who live with hepatic agitation porphyria (PAH)

Hepatic aga porphyria (PAH) is a family of rare genetic predispositions that are characterized by potentially mortal and paralyzing individuals, but by debilitating chronic symptoms that are replicated negatively in the cold and cold climate.1 2 This enzyme is caused by genetic variants that induce defects in the synthesis of hemoglobin, which conducts the accumulation in the body of a single molecule of porphyrin laminae.

The PAH Lessons podcast series deals with the need for concurrence over PAH and adjusts the time it takes to retrieve a diagnosis of this rare disease. This is a series of podcasts containing stories and conversations between real people who live with PAH and the ones that are apoyan. The objective is to experience the living experience of people with PAH, as well as to animate all those who have not been diagnosed and reconciled and to comprehend the symptoms of PAH in order to accelerate their proper diagnostic approach.

One of the episodes of the podcast covered with the testimony of Veronica, a patient with intermittent aggravated porphyria (PAI), a type of PAH, who shares her experience with Rosa María, of the Spanish Association of Porphyry (AEP). Veronica explicitly ignores the signs and initials, its progression, and how it changes from the moment it is diagnosed and decided implicitly in local associations to raise and conquer PAI in all of Spain.

The voz of patients is very short when it comes to the defense of the salute and is a series of podcasts along the way, in a different mode, which live with PAH. “The first symptomatology of the nurse is the same as in the past, in 2013. The initial phrases are derived as a hieroglyph, a indigestion in the estuary. Infinite number of diagnostics that do not solve the symptoms that are present ”explicitly Veronica. “Pero, in November 2015, I aspired to have a crisis that brought more haste that tightens urgency. You need to urge urgency for more than three months, tuvieron que ingresar. A partir de ahí, empezaron a realizar diferentes pruebas. “In principle, there are many variations, including psychiatry as well as gynecology, while observing the color of the urine, the doctor abridging the vein of intermittent porphyria.”

Rosa María, who has been living with PAI, describes how she retrospectively diagnoses, or who initially thinks that these symptoms establish the causes of Guillain-Barré syndrome: “I only have a total tetraplegia. “I’m not a doctor at all, you’re screwed in the game.”

The symptoms of PAH are similar to those of other patients with gastrointestinal, gynecological, neurological or neuropsychiatric disorders. Graves’ syndrome can be treated with hospitalizations and surgeries or emergency procedures. Frequently diagnosed erratic diagnoses, and people with PAH can expect to receive accurate and confirmed diagnostics.1

It takes a lot to hack to conquer PAH, and this podcast is not directed at patients, only doctors and doctors. “It’s a nurse about what it takes to store a lot of camino. It treats a rarity, which affects many people, and which includes the teeth of those who are affected, each of which presents different sounds and / or only different ones, but which presents a great difference only in the diagnostic, how in the treatment and in the investigation ”said Verónica. “But because it is fundamental because there are so many people who make sure they are diagnosed and who, having their initial crisis in their pockets, have a crisis that is far removed from our lives and is being treated.”

Those who do not want to be able to screw in and out of the box without having the only PAH sign: some people with PAH experience debilitating symptoms with diarrhea, the only chronic symptoms, which are not included at all the diagnostic.1.3

To download the full podcast and save more about PAH, visit: AQUÍ.

The ‘PAH Votes’ content is characteristically educationally directing patients and / or their relatives and / or caregivers, and is exclusively related to the nurse. No reference information contained in this pharmacological treatment. Alnylam is responsible for the financing and content of the website www.livingwithporphyria.eu

REFERENCE
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.
3. Simon 2018 et al. Patient. 2018 Oct; 11 (5): 527-537.

This content has been downloaded by UE Studio, the creative content branding and content marketing firm of Unidad Editorial, for ANLYLAM.

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