Connective Issues - Summer 2020

If you have a healthcare emergency (for example, chest pain or severe shortness of breath), call 911 and seek emergency medical care or visit your local hospital emer- gency room. The guidelines concerning elective medical procedures do not apply to medical emergencies. If you are experiencing a health emergency, it is important to seek medical care from your local emergency department. If you delay immediate medical care when it is needed, you may cause harm and impact your long-term health. If you are anticipating surgery, do not be surprised if certain minor treatment protocols change leading up to your preoperative assessment and/or surgery. As a result of COVID-19, many facilities have changed their protocols regarding how patients receive their preoperative assessment, any associated surgery, if needed, and any recovery. This may mean that other members of the medical team, such as nurse practitioners and physician assistants, take a more active role in your evaluation and care. These changes are designed to give you more complete medical care. Always communicate any questions or concerns you might have with your medical team concerning your care coordination. If you have any questions, please reach out to our Help & Resource Center. You can submit your questions at Marfan.org/Ask .

• Given my condition, what is a realistic timeline for me to receive proper treatment that will maximize my personal health outcomes? • Can a family member or care partner accompany me to my visit/procedure? • Can my procedure be done on an outpatient basis to limit my potential exposure to the coronavirus? • What information and resources are you sharing with your other patients that would be helpful for me right now? • Does your facility have an adequate supply of Personal Protective Equipment (PPE) for your staff? • How do state or local health department recommenda- tions affect the timing and nature of my care? If you have been deemed “urgent” or “emergent” for cardiac surgery by your medical team, do not wait to seek appropriate medical care. If your physician has determined that you urgently need surgery (for example, someone with severe degenerative mitral regurgitation), you should seek care at your healthcare facility as planned. Facilities have protocols in place to triage and treat patients to reduce risks from COVID-19. While these are uncertain times, your long-term health is of the utmost importance and care should not be delayed.

VIRTUAL CAMP VICTORY FOR KIDS JULY 27-31

Each Day Campers Can: u VIEW camp staff in a variety of

Virtual Camp Victory for Kids is an exclusive program for those with Marfan, Vascular Ehlers-Danlos (VEDS), Loeys- Dietz and related conditions, and the members of their families. This is the newest way to engage our camp community in fun camp activities, group discussions, and interactive LIVE programs for the entire family! Campers will get a week-long schedule that will allow them to choose when and how they want to engage in fun camp activities in their home environments. Camp groups will be divided based on age and each group will participate in their own special activities, plus, there will be times when all of Camp Victory will join together as one.

exciting activity videos where they will learn new skills, complete challenges, and have fun. u ENGAGE in three live activities – SPIRIT TIME, CABIN CHATS, and a family friendly EVENING PROGRAM. u POST to the camp feed to share their photos, their creations, and to tell stories of their adventures. Join with other campers and families on Monday, July 27, through Friday, July 31, to experience this new camp program Participation in this program is FREE to everyone.

Register at Marfan.org/camps Contact Susan Leshen at sleshen@marfan.org or 800-8-MARFAN x122 for more information.

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Summer 2020