What is EDS and why does it occur?
Ehlers-Danlos syndrome is a genetic condition, meaning it is congenital and often inherited within families. The connective tissue, which is found throughout the body, becomes weaker than normal. EDS is caused by changes in the body’s collagen – an important protein that provides strength and elasticity to the skin, joints, and organs. When collagen does not function properly, the tissues become more fragile, which can lead to various symptoms. The severity of symptoms varies greatly between individuals. This can cause joints to become unstable, the skin to be more stretchable, and in some cases, blood vessels to be more vulnerable.
There are several different types of EDS. The most common form is hypermobile EDS (hEDS), where hypermobility and joint problems are predominant, while other rarer types can affect blood vessels and organs more seriously.
Common symptoms of EDS
Common symptoms of EDS can vary between individuals, but below are some of the most typical signs to be aware of:
- Hypermobile joints: The joints can move more than normal and may feel unstable
- Joint pain: Pain that can be both chronic and recurring
- Recurrent dislocations: Joints that easily dislocate, especially in the shoulders and knees
- Fragile or elastic skin: The skin may be soft, stretchy, and easily damaged
- Bruising: Frequent bruising without a clear cause
- Fatigue: A persistent feeling of tiredness that affects daily life
- Slow wound healing: Wounds may take longer than normal to heal
How is the diagnosis made?
The diagnosis of EDS is primarily based on a clinical evaluation, where the doctor assesses symptoms, joint mobility, and skin characteristics. The doctor will also review your medical history and whether similar conditions exist in your family. In some cases, genetic testing may be used to confirm the diagnosis, especially for rarer types of EDS. Because the symptoms can resemble other conditions, it is not uncommon for the diagnosis to take time.
Treatment and what you can do yourself
There is currently no cure for EDS, but much can be done to reduce symptoms and improve quality of life. An important part of management is physiotherapy, where muscles are strengthened to stabilize the joints and reduce the risk of injury. Pain can be managed through various methods, including both medications and non-pharmacological approaches. Many people also benefit from aids that reduce strain on the joints in daily life. It is often important to adapt activities to avoid overexertion, while regular, gentle exercise – such as swimming or cycling – can help strengthen the body.
When should you seek medical care?
You should contact healthcare services if you have significant hypermobility that affects your daily life, especially if you frequently experience pain or injuries. Persistent joint pain or frequent dislocations are also reasons to seek help. If you suspect EDS, especially if it runs in your family, it is important to get a medical evaluation for an accurate diagnosis and proper support.
Living with EDS
Living with Ehlers-Danlos syndrome often means finding a balance between activity and recovery. With the right knowledge, adjustments, and support from healthcare providers, many people can live active and functional lives. An early diagnosis and individualized treatment can make a significant difference. By understanding your symptoms and how your body responds, you can reduce the risk of injury and gain better control over your daily life.