Our bodies’ underlying structures, including muscles, veins, and organs, are made of connective tissues. Connective tissues are a mix of cells and proteins, including collagen — the most abundant protein in the body. Elder-Danlos Syndrome is a rare genetic disorder that affects the way that your body produces collagen, creating symptoms that can interfere with your daily life.
Though this condition can significantly affect your energy, and in severe cases, your mobility, there are things you can do to manage your symptoms and prevent them from becoming debilitating. Tanya Balakrishnan, MPT, and Kelly Masuda, PT, DPT, treat patients at Momentum Physical Therapy in West Los Angeles, California.
Ehlers-Danlos Syndrome isn’t a single condition. Instead, it’s a collection of 13 disorders that typically affect the joints and skin, though some of these disorders affect your cardio-vascular system or spine. Ehlers-Danlos Syndrome, or EDS, occurs in about 1 in every 5000 to 20,000 people, making the genetic disorder a rare disease. EDS is unusual in individuals without a family history of the condition.
EDS is characterized by fragile skin that heals slowly or doesn’t heal properly, overly flexible joints, and laxity of the skin. These symptoms, as well as the severity of the disease, exist on a spectrum, with some experiencing mild symptoms, while others are debilitated. Skin laxity, wrinkles, and sagging in people not living with EDS usually indicate declining levels of collagen and elastin.
Collagen is the most abundant protein in your body, comprising some 75% of the protein portion of your skin. It is responsible for maintaining the structure of your skin, protecting it from wrinkles. Elastin, another protein that works with collagen, gives your skin the ability to “bounce back.”
Collagen exists in joints and skin in the form of fibers, and these fibers can be compromised if the body’s naturally produced collagen isn’t functioning properly due to an abnormality. Without the ability to function properly, collagen can’t do its many jobs, including maintaining the structure of the skin, resulting in skin that is textured, fragile, and lax.
EDS affects the feel and appearance of your skin, but it also noticeably affects the joints. People living with EDS typically experience chronic joint pain, nerve pain, neck pain, and chronic fatigue.
The compromised collagen in your skin and blood vessels puts people living with EDS at elevated risk of bruising and bleeding issues. Flawed collagen means that wounds rarely heal properly, and the stress on your joints may result in early-onset arthritis. Without treatment, chronic pain associated with EDS typically becomes worse, which may leave you partially or even fully disabled.
Living with EDS adds challenges and pain to every day. The pain can take a toll on the mental health of people living with EDS, causing many to develop depression and anxiety, which can lead to or exacerbate issues with insomnia.
EDS is a genetic condition and no cure is currently available. As research for treatments continues, you can rest assured that your providers at Momentum Physical Therapy will stay on top of the latest treatments for patients living with EDS.
While there is no cure for EDS, there are many pathways for disease management. Your provider at Momentum Physical Therapy offers a custom and conservative approach to treating patients living with EDS. Our providers rely on healing your body naturally with pilates, which strengthens your vulnerable joints. Your pilates therapy is meant to be used in conjunction with any medical advice prescribed to you by your medical care team.
Because EDS affects different systems of connective tissue in your body, you will work with several medical doctors in addition to your physical therapist at Momentum Physical Therapy. Your medical care team will include your primary care doctor and an orthopaedist. If you’re facing difficult emotions related to your EDS, consider the services of a mental health professional and reach out to loved ones for support.
EDS is a rare and serious condition that can leave you unable to walk or enjoy daily life. Left untreated, complications are painful. Elevate your quality of life with EDS by calling us today at 424-246-5773 or booking an appointment with us online.