Ehlers-Danlos Syndrome (EDS) is a rare genetic disorder that affects the connective tissues in the body. There are 13 subtypes of EDS, each with its own set of symptoms.

As someone who has lived with EDS for most of my life, I have experienced many of these symptoms firsthand.

Joint Pain and Instability

One of the most common symptoms of EDS is joint pain and instability. This can include frequent dislocations, subluxations (partial dislocations), and sprains. My joints are often hypermobile, which means they move more than they should.

This can cause pain and make it difficult to do everyday activities like walking or writing.

Although joint pain and instability are a common symptom of EDS, they can be managed with physical therapy, braces, and other interventions.

Chronic Fatigue

Another symptom that many people with EDS experience is chronic fatigue. Even when I get enough sleep, I often feel tired and sluggish. This can make it hard to concentrate and complete tasks.

It can also make it difficult to exercise, which is important for maintaining overall health.

There is no cure for chronic fatigue, but there are ways to manage it. This can include taking breaks throughout the day, getting regular exercise (even if it’s just a short walk), and practicing good sleep hygiene.

Skin Sensitivity and Bruising

As someone with EDS, I also have skin that is very sensitive and prone to bruising. Even a slight bump can cause a bruise that takes weeks to heal.

This can be frustrating because it makes it difficult to participate in certain activities like contact sports or even hugging someone tightly.

While there is no cure for skin sensitivity and bruising, there are ways to minimize the impact.

This can include wearing protective clothing or padding, avoiding activities that are likely to result in bruising, and taking time to rest and recover after any bumps or injuries.

Gastrointestinal Issues

Many people with EDS also experience gastrointestinal issues. This can include acid reflux, stomach pain, bloating, and constipation. I have personally experienced all of these symptoms at various points in my life.

Treating gastrointestinal issues often involves making lifestyle changes like avoiding certain foods or eating smaller, more frequent meals. In some cases, medication may be necessary.

Heart Problems

There are some forms of EDS that can cause heart problems. Although I do not have one of these forms, I do experience heart palpitations and an abnormally fast heartbeat from time to time. This can be scary, but it is usually not anything to worry about.

If you have EDS and experience heart problems, it is important to speak with a cardiologist who is familiar with the condition.

Conclusion

Living with Ehlers-Danlos Syndrome can be challenging, but it is important to remember that it does not define who you are. With proper management and support, it is possible to live a full and satisfying life despite the symptoms of this condition.