Ehlers-Danlos syndromes (EDS) are a group of inherited disorders that affect the body’s connective tissues. These tissues include skin, tendons, ligaments, and cartilage. People with EDS may have overly flexible joints, stretchy skin, and fragile blood vessels. In New Zealand, it’s estimated that one in 5,000 people have EDS. If you or someone you know has been diagnosed with EDS, it’s important to understand the condition and how to manage its symptoms.
Types of EDS
There are 13 different types of EDS, each with its own set of symptoms and inheritance patterns. The most common types of EDS are:
Classical EDS: This type is characterized by skin that is thin, easily bruised, and hyperelastic (stretchy). People with classical EDS may also have joint hypermobility and a tendency to develop scars easily.
Hypermobile EDS: People with hypermobile EDS have joint hypermobility, meaning their joints can move beyond the normal range of motion. They may also experience chronic pain, fatigue, and gastrointestinal issues.
Vascular EDS: This type is the most serious and potentially life-threatening. It is characterised by fragile blood vessels that can rupture, leading to internal bleeding or organ damage.
Managing EDS
While there is no cure for EDS, there are several ways to manage its symptoms. Here are some tips to help you manage EDS:
Exercise: Regular exercise can help improve muscle strength and joint stability, which can reduce the risk of dislocations and other injuries. Mobility aids such as a crutch or walking stick can provide support and stability.
Physical therapy: Working with a physical therapist can help improve joint stability and prevent injury. A physical therapist can also provide guidance on safe exercises and stretches.
Pain management: Chronic pain is a common symptom of EDS. Pain management techniques such as medication, heat therapy, and massage can help reduce pain and improve quality of life.
Wound care: People with EDS may be more prone to skin tears and other injuries. Proper wound care can help prevent infection and promote healing.
Living with EDS
Living with EDS can be challenging, but it’s important to remember that you’re not alone. There are support groups and online communities where you can connect with others who are going through similar experiences. It’s also important to work with a healthcare team that understands EDS and can provide appropriate care and support.
If you or someone you know has been diagnosed with EDS, don’t hesitate to seek medical advice and connect with support groups. With the right management strategies and support, you can manage your EDS symptoms and enjoy a better quality of life.
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