The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here.
As we slide back into our routines following the long holiday break, we are faced with the somewhat daunting challenge of sticking to our resolutions.
From saving more and spending less to learning a new skill or finding more time for family and friends… in most cases, we stick to it for a bit and then shrug it off and hope for a better kickstart next year.
But those in the Marfan and related conditions community have a New Year’s resolution that they cannot afford to ignore or even delay: organizing their health information and taking control of their health journey.
Conditions like Marfan, Loeys Dietz, and vascular Ehlers Danlos syndrome make an individual’s health journey nuanced and complex, requiring management that extends far beyond scheduling a periodic doctor’s visit. For many, this is multiplied because several in a family may be affected. It’s a full-time job that demands both time and energy.
With complex health concerns and conditions comes the need for numerous specialists, medications, and the constant maintenance and tracking of symptoms, as well as the need to remain up to date on the latest treatments and care. Furthermore, with each visit to a new doctor or hospital, affected people are burdened with the task of accurately communicating the complexities of their medical histories to ensure they receive the best possible care.
If you’ve tried doing this the old-fashioned way – by keeping your records in a folder or binder – you know what a burden that can be. It adds stress to daily life and makes traveling nearly impossible.
While taking control of your health journey seems like the most daunting New Year’s resolution, it’s actually the easiest of all, thanks to The Marfan Foundation’s partnership with Backpack Health.
Backpack Health is a mobile and cloud-based app that empowers people by making it easy for them to access, own, and control all their health information to support better health for themselves, their loved ones, and their communities. Just like a real backpack, the portable, multi-lingual app allows users to carry around what matters most – their personalized, comprehensive medical information and documents – in one central location.
It’s easy for people with Marfan and related conditions — and the people who care for them — to get started; there are no paper folders or binders required. And Backpack Health improves care management and coordination by providing a no-hassle solution for monitoring their treatments and sharing their health information virtually anywhere in the world.
The added bonus (yes, there’s more!) is the automatic entry into the first-ever Marfan Syndrome and Related Disorders International Patient Registry, which provides an opportunity for affected people around the world to participate in research that can have implications for generations to come. Upon user consent, the healthcare information provided within the app will be de-identified (so it’s not tied to you) and aggregated (combined with the health records of others in the registry), making it possible for researchers to leverage the power of the data and analyze it to increase the understanding of these conditions and find better ways of diagnosis and treatment.
So not only is this New Year’s resolution easy to keep, it is also one that will empower you in ways you thought impossible while simultaneously improving the lives of other people with Marfan and related conditions. It’s the ultimate win-win and an incredible way to kick off 2019.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.