The Ehlers-Danlos syndromes are a collection of thirteen multi-systemic, heritable disorders affecting connective tissue, the most abundant tissues in the body. With the exception of the hypermobile Ehlers-Danlos syndrome, each type is distinct and defined by mutations in a single or small set of genes. Common features among the types include joint hypermobility, skin fragility, chronic pain, and fatigue. More severe types, such as Vascular Ehlers-Danlos syndrome, can be life-threatening, as fragile blood vessels and internal organs can spontaneously rupture.
Patients with Ehlers-Danlos syndromes are often referred to as “zebras,” which references a popular medical school mantra, “When you hear hoof beats, think horses, not zebras,” equating zebras with rare diseases. In the wild, a group of zebras is called a dazzle.
“More awareness is needed for these often misdiagnosed and misunderstood conditions,” said Lara Bloom, International Executive Director of The Ehlers-Danlos Society and an EDS patient herself. “For too long, patients have had to wait years, even decades, for a diagnosis. Until an accurate diagnosis is made, patients cannot get the proper care they need to handle the many debilitating manifestations of their condition. Our goal is to make the Ehlers-Danlos syndromes so widely recognized that these patients get the care they need as soon as they present with symptoms.”
Integrative Wellness, Inc. Physical Therapy has been helping patients live better with hypermobility for more than 20 years.
As a physical therapist with Ehlers Danlos Syndrome (EDS), Dr. Natalie Dowty provides solutions and insight for patients with hypermobility disorders both from clinical expertise and personal experience. She has a passion for learning and empowering others. She is a participating clinician for the Nebraska EDS Awareness and Support Group provider consortium. Natalie has served as faculty in college programs for health education, health promotion and allied health education in the Omaha area for more than 24 years.
WHAT ARE HYPERMOBILITY AND EHLERS-DANLOS SYNDROMES (EDS)?
Joint Hypermobility. Joints that move beyond normal range of motion. It can exist by itself or as a part of a more complex diagnosis.
Hypermobility Spectrum Disorders (HSD). A group of joint hypermobility conditions, typically diagnosed after all other disorders have been excluded.
The Ehlers-Danlos Syndromes (EDS). A group of inherited connective tissue disorders characterized by joint hypermobility (loose joints, laxity), skin hyper-extensibility (skin stretches beyond normal), and tissue fragility. There are currently 13 subtypes of EDS, each with clinical and/or genetic criteria. Significant symptom overlap occurs between EDS subtypes and other connective tissue disorders, including Hypermobility Spectrum Disorders.
TREATMENT IS MORE IMPORTANT THAN LABELS.
Diagnosis helps empower patients to prevent future injury and loss of function. However, everyone experiences EDS/HSD in their own way. At Integrative Wellness, Inc. Physical Therapy, your individual impairments will be assessed and targeted with a comprehensive, long-term management plan.
EACH PERSON’S CHALLENGES WITH EDS / HSD ARE UNIQUE.
Many require specialized physical therapy treatment.
Pain and diminished function are common in EDS/HSD, whether recurring, chronic or both. Often, traditional treatment yields discouraging results. To successfully manage pain and physical challenges, it is important to first understand causes. All of the issues below can intensify discomfort and dysfunction in EDS/HSD. Each of the following concerns will be specifically targeted, as needed, in your individualized rehab/wellness program.
• Trauma. Joint dislocation, subluxations, soft tissue (ligaments, tendons, muscles, nerves) impingement or damage.
• Micro-trauma. Small unnoticed injuries that accumulate over time, and lead to pain and early joint degeneration.
• Nervous System Changes. The brain and nerves adapt to chronic pain and laxity, leading to a heightened pain response, chronic stress (fight or flight) response and abnormal nervous system function.
• Impaired Body Awareness. Decreased perception of the relative positions of body parts, and how much effort is needed for movement.
• Weakness/Deconditioning. Decreased strength, endurance and motor control.
• Decreased Coordination. Difficulty initiating, and using various body parts together smoothly and efficiently during voluntary movement.
• Fatigue. A lack of energy that is not adequately restored with appropriate rest.
• Declining Posture. Structural laxity, weakness, muscle guarding, and impaired body awareness and motor control make it hard to hold the body in alignment against gravity.
• Unstable Body Mechanics. Connective tissue laxity reduces the efficiency of the musculoskeletal lever and shock absorption systems, making it harder to maintain balance, posture, and alignment during movement.
• Muscle Guarding. Protective increase in muscle tone may lead to muscle spasm and impaired muscle function.
• Joint Malalignment/Malformation. Abnormal skeletal structure, i.e., flat feet, pectus excavatum (sunken chest).
• Low Resiliency. Reduction in the mind and body’s ability to bounce back from injury, pain, stress and fatigue.
If these are the challenges that you face, I am here to help.
Please call Dr. Natalie Dowty at 402-212-7444 to get the specialized care you need.
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