Mary Chapman, features writer —

People with Ehlers-Danlos syndrome (EDS) may experience bowel issues such as intestinal dysmobility. Here are ways to help manage these symptoms. Why does EDS cause bowel issues? EDS affects the connective tissue, which is present throughout the body, including in the bowel. Connective tissue is…

To raise awareness of the rare disease communities and celebrate the creativity of its members, the EveryLife Foundation for Rare Diseases is seeking submissions to the 2020 Rare Artist contest. Established in 2010, the contest is open internationally to patients, caregivers, physicians, friends, or anyone else who…

Physiotherapy can help people with Ehlers-Danlos syndrome (EDS), which is a group of disorders that affect connective tissues and cause symptoms that range from mildly loose joints to life-threatening complications. If you’re about to start a physical therapy program, here’s what you can expect. Before your…

After what was likely a long journey, upon diagnosis you learned that you are among the estimated 1 in 5,000 people who have Ehlers-Danlos syndrome (EDS). Although you may be relieved to finally know the cause of your loose joints and other symptoms, you my still need guidance. Here…

Sleep disorders are common among people with Ehlers-Danlos syndrome (EDS). Because a good night’s sleep is essential to your health, both physically and mentally, and to a good quality of life, it may be beneficial for you to practice what’s called sleep hygiene. What is sleep hygiene? Sleep hygiene…

While “brain fog” is not one of the most common symptoms of Ehlers-Danlos syndrome (EDS), many patients report experiencing this form of cognitive dysfunction, which can affect their ability to focus, learn, retain information, and maintain employment. What is EDS? EDS refers to a group of genetic…

Fatigue is common to people with a chronic disease, and a likely constant companion to those with Ehlers-Danlos syndrome.  Here are some tips to help you manage fatigue, and possibly get relief. Fatigue is difficult to quantify Fatigue is called chronic if it’s been present for more than six…

Because Ehlers-Danlos syndrome (EDS) affects many different systems in the body simultaneously, you may experience many different symptoms. Coping with them can be a challenge. A practice called mindfulness may help. What is mindfulness? Mindfulness means maintaining a moment-by-moment awareness of your thoughts, feelings, and body sensations, and…

If you have Ehlers-Danlos syndrome (EDS), you likely experience chronic pain that can be severe on occasion. The pain may be widespread or limited to one area of your body. Here is some information about the pain caused by EDS, and ways to help manage it. What is EDS?…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…