May is Ehlers-Danlos Syndrome (EDS) Awareness Month: Lena Dunham and EDS
- rutlandliving
- 2 hours ago
- 2 min read
"It’s fitting that I was born in May because it’s also EDS awareness month. If you or someone you love lives with EDS, this is the time to make some noise about it."
"There’s no neat ending with chronic illness - it’s about learning how to live alongside it."
Lena Dunham born May 13, 1986 is an American writer, director, actress, and producer, widely recognised for her distinctive voice in contemporary storytelling. She rose to prominence as the creator, writer, and star of the HBO series Girls (2012–2017), a show that captured the complexities of young adulthood with honesty and nuance. Her work on Girls earned her multiple Emmy Award nominations and two Golden Globe Awards, cementing her status as a leading figure in television.
Through her work across multiple platforms, Dunham has consistently challenged conventions and sparked conversation, establishing herself as a significant and often provocative voice in modern media. She is known for her openness when it comes to health, body image, and chronic illness. In recent years, she has spoken publicly about living with Ehlers-Danlos Syndrome (EDS), helping to bring wider awareness to a condition that is often misunderstood and underdiagnosed.
Ehlers-Danlos Syndrome is a group of inherited disorders that affect connective tissues- the structures that support skin, joints, and blood vessel walls. Symptoms can vary widely, but often include joint hypermobility, chronic pain, fragile skin, and fatigue. Because of its complexity and range of presentations, many people experience long journeys to diagnosis. By discussing her own experience, Dunham has helped highlight the realities of living with a chronic, invisible illness: “Living with chronic illness is a full-time job -it requires a kind of attention and care that people don’t always see.”
She described how symptoms such as joint instability and ongoing pain affected her daily life and career, particularly during her time creating and starring in Girls. Her decision to step back from certain professional commitments has, in part, been linked to managing her health more sustainably.
“Until I was in my late twenties, I didn’t know that all my bendy party tricks (or the random fits of flushing which made red lipstick a gamble, or my migraines or swollen knees or fainting spells…) weren’t just quirks. They were all part of Hypermobile Ehlers-Danlos Syndrome, a genetic condition that means a lack of collagen in my connective tissue. This causes everything from joint pain & dislocation, poor wound healing and a plethora of seemingly random symptoms that aren’t so random at all.”
