News on the latest discoveries and experiments for the treatment and diagnosis of Cardiomyopathies.
When should the test be performed, do patients ask themselves? The answer is: following a certain diagnosis or reasonable suspicion of the disease. The same rules apply to children, with the addition that the test can very rarely be performed even in the prenatal age.
The 15 questions most frequently asked by patients with hypertrophic cardiomyopathy (HCM) during pre- and post-test genetic counseling interviews with the related answers from the team of specialists dedicated to this pathology (cardiologists, geneticists, psychologists, etc.) .
Pediatric cardiomyopathies: initial encouraging results in gene therapy studies. This was discussed in Florence on 13-14 April 2023 at the congress "Advances in pediatric heart failure: congenital heart disease and cardiomyopathies", organized by Prof. Olivotto, Dr. Favilli (Florence) and Prof Kaski (London), and supported by the Menarini Foundation.
What is the remote control of subcutaneous defibrillators (S-ICD) for: the detection of "atrial fibrillation" or other arrhythmias
In 2021 Michael Alexanian, Phd, combining his interest in epigenomics with heart disorders, together with colleagues from the Gladstone Institute made a revolutionary discovery: the MEOX1 gene, responsible together with other genes, for cardiac fibrosis.
Scientific and medical knowledge on rare diseases is sometimes scarce and inadequate. For a long time they have been ignored by doctors, researchers and institutions and scientific and political activities aimed at research in the field of rare diseases did not exist until a few years ago.
The utmost attention should be paid to checking the operation of the Emblem A209-A219 subcutaneous defibrillators as the device may need to be replaced due to premature and accelerated battery depletion.
In the last year it has happened that patients suffering from obstructive hypertrophic cardiomyopathy did not find an essential drug available for their therapy.
The antiarrhythmic drug Ritmodan and Ritmodan Retard are still unavailable in Italian pharmacies. Aifa has again postponed the deadline for the shortage and, as regards the Ritmodan Retard, it seems that we will have to wait until at least mid-February 2022.
What does “shared decision-making” mean. Lisa Salberg founder and CEO of the American Association for Hypertrophic Myocarditis (HCMA) sent a video message to the "Advances in Cardiomyopathies" conference on 9-10 September, explaining how the concept is implemented in the United States. “We want patients to be excited about the future and understand their options and know how to ask smart questions that will help them achieve their goals,” he said. We publish broad passages from the speech that provide important elements for the discussion on the subject in Italy
