Ehlers-Danlos Syndrome

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a group of disorders that affects the connective tissue. Connective tissue makes up the skin, joints, and blood vessels and provides strength and elasticity to the body. Those who live with Ehlers-Danlos syndrome tend to have extremely flexible joints and very delicate skin. A more severe form of this disease, called vascular Ehlers-Danlos syndrome, can be life-threatening because it may cause major blood vessels to rupture.

What are the symptoms of Ehlers-Danlos Syndrome?

The severity of symptoms varies greatly depending on the type of Ehlers-Danlos Syndrome you have. Common symptoms include: 

• Extremely flexible joints
• Stretchy skin
• Delicate skin

What causes Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is an inherited disease meaning the cause is genetic. Depending on the type of Ehlers-Danlos syndrome you have, the likelihood of passing it down to potential children can vary. The most common type of Ehlers-Danlos syndrome is hypermobile Ehlers-Danlos syndrome. This form of the disease has a 50% chance of being passed down to future children. Those who live with Ehlers-Danlos and would like to start a family are typically referred to see a genetic counselor before having children. This can help individuals better understand the risk that they may pass the disease down to their children to help determine how to move forward with family planning.

How do you treat Ehlers-Danlos Syndrome?

There is no known cure for Ehlers-Danlos syndrome, but there are various therapeutic options that can help with symptom management. Medications to manage pain and blood pressure are commonly prescribed. Over-the-counter pain relievers are usually used to manage pain rather than prescription medications. Blood pressure management can be important in individuals who live with Ehlers-Danlos syndrome. The blood vessel walls may be fragile, so your doctor may prescribe medications that lower your blood pressure. Physical therapy is another helpful treatment for Ehlers-Danlos syndrome since it can help to stabilize joints and strengthen muscles. Surgery may be recommended to repair joint damage but isn't always the best option since wounds may not heal properly. 

The Power of Ehlers-Danlos Syndrome Support Groups

If you’ve been diagnosed with Ehlers-Danlos syndrome, you may be wondering: what does EDS mean for your lifestyle? How will it impact your day to day?

Only one in 5,000 live with EDS syndrome, meaning an EDS diagnosis can easily start to feel isolating. But you’re not alone — you can find people just like you in EDS support groups. In our online community, you’ll find helpful EDS resources, guidance on how to cope with Ehlers-Danlos syndrome symptoms, discussions about the various Ehlers-Danlos syndrome types, and inspiring stories of people living normal lives with EDS.

Care, Support, and Opportunity

Break the barriers of isolation in a non-judgmental, criticism-free environment with an online support group from the Mighty. Speak openly and honestly about living with Ehlers-Danlos symptoms, share your advice with others, and accept help from people who understand your experience.

Support groups for Ehlers-Danlos syndrome are designed to offer advice and provide support when you need it most. You’ll gain access to a strong support network where you can talk about your disorder, learn helpful tips for dealing with everyday problems, and be inspired by the stories of others.

Your Ehlers-Danlos syndrome does not define you, and with the power of the shared human experience, you can keep living your life to the fullest. Join the Mighty EDS support group today!