When you’re recovering from surgery or having a pain flare-up, people often ask how they can help. But when you’re not feeling well, it’s hard to know what to say. These worksheets are designed for adults, teens, and kids to communicate the best ways to support them through medical events.
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Family Health History
Your family health history is a collection of health information about you and your close relatives. It contains information about disorders, diseases, and health problems that you and your children may be at risk for now or in the future. Most important, it can also help your doctors as they consider whether or not you […]
Tags: Marfan Syndrome , Patients & Families
Patient Care Coordination Instructions
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
Tags: All, VEDS , Healthcare Professionals, Patients & Families
Ehlers-Danlos Syndrome Hypermobility
Ehlers-Danlos Syndrome hypermobility type is one of six different types of Ehlers-Danlos syndromes, and it is the most common. Ehlers-Danlos syndrome hypermobility type is a connective tissue disorder that predominantly affects the skeletal system. It is characterized by loose joints, often associated with chronic (long-term) joint pain. What other names do people use for Ehlers-Danlos […]
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