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What is Ehlers-Danlos Syndromes (EDS): Lena Dunham's rare condition that affects skin, joints, and more

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In the era of body positivity and acceptance, Lena Dunham has faced a great deal of criticism from netizens and even the industry over her weight. But the Girls creator and actor is far from a pushover. She has openly addressed the internet’s relentless obsession with her body.

In a recent interview with The Times, Lena said, “I expected that people would have a response to the kind of sex the show was depicting or the level of nudity, but the idea that my body, the shape of my body, would become such a hotbed for discussion? It was insane.”

So intense was the public’s focus on her body that in 2013, Howard Stern referred to the Netflix star as “a little fat girl,” and the following year, Jezebel magazine offered $10,000 for the unretouched version of her Vogue cover to expose any photo editing.

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Lena shared that these things didn’t matter to her much, and she has largely managed the criticism surrounding her appearance and self-image. While not the sole reason, Lena gradually stepped out of the spotlight after her show went off air in 2017. Now, eight years later, Dunham is back with a new rom-com series called Too Much on Netflix. Yet the intense scrutiny persists, with many on the internet still trolling her.

In another interview with Variety, Lena explained, “I have had my body change because of life, illness, aging, menopause. And it is merciless wherever you are.”

This is not the first time Lena has spoken about her body struggles; she has previously shared that her weight fluctuations were influenced by health issues, including endometriosis, a hysterectomy, and recovery from prescription drug addiction.

In a 2018 Instagram post, she shared side-by-side photos comparing herself at 138 pounds, when she was struggling with chronic pain and addiction, to 162 pounds, describing herself as “happy, joyous & free” after gaining 24 pounds.

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In 2019, Lena also revealed that she was suffering from Ehlers-Danlos syndrome (EDS), responding to paparazzi photos showing her walking with a cane. She said, “An Ehlers-Danlos syndrome flare means that I need support from more than just my friends… so thank you, sweet cane!”

But what is EDS?

Symptoms and causes of EDS

Ehlers-Danlos syndromes (EDS) refer to a group of 13 inherited connective tissue disorders caused by genetic changes that affect the structure and function of connective tissue. Each type of EDS has its own unique features and specific diagnostic criteria.

However, some symptoms are common across all types, including joint hypermobility (an unusually wide range of motion in the joints), skin hyperextensibility (skin that can be stretched beyond the normal range), and tissue fragility(skin that bruises easily). EDS can affect people differently. For some, the condition is relatively mild, while for others, the symptoms can be disabling.


The various types of EDS are caused by faults in certain genes that weaken connective tissue. Depending on the specific type, the faulty gene may be inherited from one parent or both. In some cases, the gene change is not inherited but occurs spontaneously in the person for the first time. Some of the rarer, more severe forms of EDS can even be life-threatening.

What’s the risk age?

People of all ages can be diagnosed with EDS.The National Center for Biotechnology Information says infants with some of the disorder types can take a longer time to sit, stand and walk. “Those loose joints are unstable and prone to dislocation and chronic pain,” the center says. Another type may cause hip dislocation in infants at birth, according to the center.
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Types of EDS

There are 13 types of EDS, most of which are rare of which Hypermobile EDS (hEDS) is the most common type.


Arthrochalasia EDS (aEDS):

Characterized by severe joint hypermobility and dislocations, with skin hyperextensibility and atrophic scarring.


Brittle Cornea Syndrome (BCS):

Associated with thin, fragile corneas, leading to frequent eye injuries and potential vision loss.


Cardiac-valvular EDS (cvEDS):

Primarily affects the heart valves, causing them to weaken and leak, potentially leading to heart failure.



Classical EDS (cEDS):

The most well-known type, characterized by skin hyperextensibility, atrophic scarring, and joint hypermobility.


Classical-like EDS (clEDS):

Shares some features with cEDS, but with potentially more severe skin and joint issues.


Dermatosparaxis EDS (dEDS):

Characterized by extremely fragile and sagging skin, often with hernias and other complications.


Hypermobile EDS (hEDS):

The most common type, distinguished by joint hypermobility, pain, and fatigue.


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Kyphoscoliotic EDS (kEDS):

Features progressive spinal curvature (kyphoscoliosis), joint hypermobility, and muscle weakness.


Musculocontractural EDS (mcEDS):

Involves muscle and joint contractures, along with skin and skeletal abnormalities.


Myopathic EDS (mEDS):

Characterized by muscle weakness and atrophy, in addition to joint hypermobility and other EDS features.


Periodontal EDS (pEDS):

Primarily affects the gums and teeth, causing early tooth loss and gum disease.


Spondylodysplastic EDS (spEDS):

Involves skeletal abnormalities, including short stature, and may affect the spine and limbs.


Vascular EDS (vEDS):

The most serious type, characterized by fragile blood vessels that can rupture, potentially causing life-threatening complications.



Disclaimer: This article is for informational purposes only and is not intended to substitute professional medical advice, diagnosis, or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard or delay seeking medical advice because of something you have read here.
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