Save Our Sons Duchenne Foundation continue to make cardiac care a priority in its programs and research efforts.
On Valentines Day we raise awareness that ‘Duchenne breaks hearts literally, because the heart is a muscle too’.
Currently, even with improved respiratory care and surveillance, cardiac muscle deterioration is still the leading cause of death in those with Duchenne.
With treatments on the horizon we live in hope that we will stop Duchenne in its tracks, but until then, we are making the cardiac health of all those living with Duchenne across Australia a major focus.
Our nurses program focuses on improving clinical care, coordination of care and appointments to ensure that the reviews by cardiologists, investigations such as cardiac echos and ECG’s are all performed. They also facilitate the clinical trials for those living with Duchenne.
The international clinical care considerations for Duchenne were updated and published in the Lancet in 2018. These publications are aimed at the professionals that care for those with Duchenne, and contain detailed, evidence based recommendations for all care but importantly, the care of the Duchenne heart.
Save Our Sons Duchenne Foundation have been working hard to ensure the care considerations reach all the clinics across Australia, both for children and adults. Save Our Sons Duchenne Foundation launched a research project in collaboration with Westmead Childrens Hospital in mid 2018, looking at targeting heart rate in the prevention of cardiomyopathy in Duchenne. This important study is the first of its kind in Australia and the study will be recruiting soon.
Our mission is still focused on the ultimate goal of an effective therapy, or cure for all living with Duchenne. To achieve our mission Save our Sons Duchenne Foundation continue to raise funds for vital research and our nursing and equipment programs.
Help us stop hearts breaking, and support Save Our Sons Duchenne Foundation this Valentines Day ️
Written by Klair Bayley – Executive Officer Clinical Care and Advocacy
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