Connective Issues - Fall 2019

PERSONAL HEALTHCARE ADVOCACY

Heaney, who has an extensive and complicated medical record since he was diagnosed with Marfan syndrome at age three. “Your doctor will be able to get down to business with what you’re there for because the information they need is right there. Having that information available makes you more likely to be heard, which can be such a big issue for people with complex conditions.” Organizing medical information is key to being a personal advocate for your healthcare. This is particularly important for individuals with rare conditions like Marfan, Vascular Ehlers-Danlos, Loeys Dietz, or other genetic aortic conditions. When a full team of skilled professionals are not available, Dr. Shaine Morris of Texas Children’s Hospital advocates for individuals to cultivate a personal medical champion. “When the condition is rare, there are few medical institutions that have multiple specialists. Most patients have a champion who slowly trains the people around them,” said Dr. Morris. “Another good practice is to go once a year to a center that offers many specialty services.” But even with a champion, an emergency situation is going to present special challenges for people with rare conditions. This is where a

When living with a complex medical condition like Marfan, vEDS, Loeys Dietz, or another genetic aortic condition, personal healthcare advocacy is vital to obtaining the best possible care. This is especially true in geographic areas where there are not wide ranges of specialists to see. Finding a personal medical champion and utilizing tools like Backpack Health can help. Conference registrants who wished to attend the Health Fair completed their application by filling out their sharecard in Backpack Health. This gave full medical history details to all the Health Fair physicians, improving the efficiency and quality of the experience for everyone. Beyond the Health Fair, the incorporation of Backpack Health also equipped every participant with the best tool available to be their own personal health advocate on an ongoing basis. Backpack Health is a free app that makes it easy for everyone to access, compile, and control all their health information to support better health for themselves and their loved ones. Having all medical information in one secure place allows users to advocate for their best care. “Doctors take what you say more seriously when it’s clear you’re organized and engaged, said Chris

Organizing medical information is key to being a personal advocate for your healthcare.

“At the Health Fair, the echo tech was wishing she had known my husband’s previous LV volume and just pulled up Backpack Health to find it. I didn’t have to bring anything with me. This was a blessing because it means that no matter where we go, the medical professionals will have access to our medical history.” – Linda Westmoreland Backpack Health is available in six languages, the sharecards are also a great benefit when traveling. With Backpack Health, you control your medical records, which is key to your personal healthcare advocacy. tool like Backpack Health can again be a literal life-saver. Users can create “sharecards” within Backpack Health to provide specific information to others, such as new doctors you are visiting, emergency care providers, school nurses, or other family members. You choose which information goes on each sharecard and you choose who to share the information with. Because

u SPONSORS PRESENTER Texas Children’s Hospital LEADER American Communications Construction Backpack Health Baylor College of Medicine Hitachi Joseph Coselli, MD CONVENER Ambry | GeneDx Invitae | Orthopediatrics CONTRIBUTOR Ndd Medical Technologies UTHealth | Siemens

u PLANNING

THANK YOU Special thanks to the following individuals and companies who were instrumental in making this year’s conference a huge success. We couldn’t be more grateful for your time, talent, and support!

COMMITTEE

CO-CHAIRS Alix McLean Jennings, LCSW The Marfan Foundation Board of Directors Maya Brown Zimmerman The Marfan Foundation Professional Advisory Board Advisor Amy Flanagan | Peter Donato Rachel Guderian | Becky Gunn Sarah Jeffs | Marco Simpliciano HOUSTON REPRESENTATIVES Shaine Morris, MD Taylor Beecroft, CGC Lisa D’Alessandro, MD Jose Soto | Karen Wilkinson COMMITTEE MEMBERS Lou Arias | Pam Austin

Join Backpack Health and the Marfan and Related Conditions International

Patient Registry at: https:// my.backpackhealth.com/join/ MarfanRelatedDisordersRegistry

u HOST Texas Children’s Hospital

u PHOTOGRAPHY Timothy D. Joyce Photography

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Fall 2019