Actress Lena Dunham Reveals Her Rare Disease

Premier Health Now

When a paparazzi photo was published of Lena Dunham in a nightgown and walking with a cane, the creator and star of HBO’s “Girls” decided it was time to reveal she has Ehlers-Danlos syndrome.

“This is what life is like when I’m struggling most with chronic illness,” said the actress via Instagram. “An Ehlers-Danlos syndrome flare means that I need support from more than just my friends... so thank you, sweet cane!”

Premier Health Now asked Michael Griesser, MD, with Premier Orthopedics to describe how Lena may have gotten the disease, and how it might affect her career. Ehlers-Danlos is a rare disease that affects your connective tissue – either your skin, joints, blood vessel walls or all three, he explains. “It’s a problem with the amount and/or the quality of collagen your body produces, and tends to be passed down among family members,” he says.

Collagen is a fibrous protein that controls your body’s elasticity. Many Ehlers-Danlos patients have overly flexible joints that cause frequent dislocations of shoulders, knees, and fingers. “Sometimes the skin becomes too elastic and will stretch more than usual when a wound heals, creating scars that look different,” says Dr. Griesser. Less common are symptoms that affect the blood vessels to and from the heart, which can cause cardiovascular problems.

The earliest signs of the disease typically occur during the teenage years and early 20s. Although those who suffer from Ehlers-Danlos can have flare-ups that cause a lot of pain, Dr. Griesser says the disease is manageable. “There is no cure, but people who have it can learn how to manage their pain and live normal lives,” he says. “I fully expect Lena Durham will continue with her career,” he adds. Those whose disease affects the blood vessels are closely monitored for signs of potential rupture or other heart problems.