Lena Dunham has EDS?

Lena Dunham has Ehlers-Danlos Syndrome. Excuse me, she has Ehler-Danlos Syndrome. Ouch. That is just as bad as calling it ED instead of EDS. Or Errrrlers-Danlos. All very fast ways to lose cred with My People. If you can’t get the name right, what else would you get wrong? We are sorely misunderstood and we resent it.

Like many rare diseases, Ehlers-Danlos Syndrome was named after the first doctors to elucidate it in the medical literature. Back around 1912, both Dr. Ehlers and Dr. Danlos did that, and now we are stuck with them. When people ask what I have, I say, “Let me show you,” as I take out my medical alert card, explaining that the name is too hard to understand. Drs. Ehlers and Danlos were dermatologists. It is hard not to notice our extraordinarily beautiful skin, which I also point out to the curious.


Made by the Ehlers-Danlos National Foundation, which no longer exists.

I would prefer my disease had a descriptive name like cancer or diabetes. I would like it to be called Contortionist Syndrome

I used to hope that as more genetic causes of Ehlers-Danlos get found, we would get spun off into different diseases with better names. That is not what is happening, they just keep adding subtypes. Even worse, I qualify for the newly revised diagnosis of hEDS, so it looks like I am absolutely on my way to making the final cut of Hypermobility Ehlers-Danlos Syndrome. Oh well. Life with EDS is one of endless disappointments.

Lena Dunham talked about her Ehler-Danlos diagnosis and her other health problems on a very interesting podcast with Dax Shepard, which I enjoyed very much. My impression is that Lena’s health problems are practical jokes from Ehler-Danlos and that no one has explained this to her. She seems to think this just makes her very flexible. Well, that is still what many doctors think, unfortunately.


Lena recording podcast with Dax Shepherd

Maybe Lena didn’t know her picture would be taken, so she did not bother to brush her hair. Or is this millennial chic? Or is brushing your hair when you have EDS just too painful and too tiring? We understand. When you have EDS, caring for your appearance takes too much energy. And clothes hurt, so no dressing well. Only, soft, non binding breathable fabrics, please.

What extraordinary luck that Lena was born at a time to capitalize on this. Her brand, which I describe as EDS induced slobbiness, made her stand out. In my day, this was just not done. I remember the time before lycra existed, when jeans did not even stretch. Can you imagine? Clothes hurt so much, I really didn’t want to leave the house, soul-crushing fatigue aside. I am pea-green with envy that I am not a Millennial, and there is no emoji for that, just the nausea face 🤢 which I can totally use for Girls.


Girls, definitely not women.

I tried to watch Girls. I thought it was cute at first, but it was too revolting to stick with. What is it with Millennials and their obsession with their assholes? Desperation to get some parental disapproval or limits set? Trying to gross-out the grown-ups? It’s working, Kids.

Derrière activities are ubiquitous in Millennial comedy, and highly unsanitary. Reminds me of the orgasm impressions male stand-up comedians of the 1980’s built their routines around, which, at least, were clever. However, neither is interesting, let alone funny. Awkwardness about sex is our Puritanical heritage as Americans, totally boring, and why I avoid all Judd Apatow content.

But back when I couldn’t stick with Girls, I did notice that Lena was so doughy, un-toned and her posture was so bad, I even said to Mr. Pennington, “Wow, she sure looks like she has Ehlers-Danlos Syndrome. Huh!”

Lena has that super cute EDS face, the Disney princess nose that ends in an upward point, and the beautiful slope of her chin and cheekbones, so typical of us. And her luminescent skin.


Looks like EDS to me.

I am wondering if Lena is diagnosed with Hypermobility Spectrum Disorder or hEDS? Are there doctors out there even applying the new diagnostic criteria? You would have to have a lot of tests and imaging to know that you meet enough criteria to qualify for hEDS. I go overboard pushing my insurance to pay for absolutely everything EDS, which is why I know for myself, hEDS it is.

Not that the diagnosis as described at this time matters. It doesn’t. What matters is that faulty collagen hurts and is a terrible burden on the body. What matters is that you understand your unique issues, and that you are getting the best care that you can. You are, right?

The Hypermobility Ehlers-Danlos (formerly Type III) criteria was revised recently to focus DNA research, so more genetic causes could be found. Looking for one dangerous gene amidst the vast human genome, when all of us carry many mutations, most of which are harmless, is a huge project. The making of collagen in the human body is so complicated, and it could be going wrong anywhere along the way. Many genetic disorders have loose joints as a feature. What a nightmare. So is life with EDS.

The best hope of finding a genetic cause is by regrouping us bendy people according to a stricter list of symptoms. Compare the DNA of people who seem like they have they same disease to see what suspicious, unique genetic flaw we have in common. PS - the problem could be in the little-explored area between genes, a region much bigger and even less understood than the genes themselves. I will have a party when I get a cause found. You can come.

I was also grossed-out by the endless disrobing and truly unsexy sex scenes on Girls. Interesting premise for a show. I get it. Kinda. I am something of an exhibitionist myself on my me-me-me blog.

But Girls was, um, I mean, I guess, one could engage in no-holds-barred, anything-goes-with-anyone hook-ups simply because you woke up and crossed paths that day. I hear Millennials do that. But how about the ritual of attraction, selection and seduction? Watch French films to learn more. Have a sense of yourself. Wait. Have a game of it. That takes a lot longer than doing it with anyone for no reason. It might be more fun. It might be a way to avoid HPV, herpes, antibiotic resistant gonorrhea and syphilis, which was so 19th century but now is back. I have enough medical problems, thanks. 

My message to Millennials is to learn discernment. That is an ability to judge. Choose quality over quantity. Have standards over just having any flotsam that drifts your way. Sensuality is the experience of one’s own senses, quite different from simply stimulating them. Have a richer life experience, and maybe even more self-esteem. What does the French lady behind the cc gang sign of luxury have to say?


Millennials, let me tell you, I have been married about 100 years now. How you keep someone interested in you for years on end is too much to go into here, but we could call that a different kind of seduction. I will also say that boring married sex is highly underrated. No one talks about that. Also entirely overlooked is the adventure of getting to know someone inside and out, through the travails and vicissitudes of life. It is also a profound way to get to know oneself. I just thought somebody should tell y’all. And I don’t leave my house without making my bed and cleaning up my kitchen because I want the pleasure of walking back into peace and order, a way to privately celebrate the joy of my own life. Which is also why I brush my hair even if I am not leaving the house.


Holiday X-mas Party

In my vintage faux fake full-length beaver coat.


Let’s not hold it against sweet Lena that she said the name of our disease wrong. Or that she’s entirely clueless about it. I am not trying to insult Lena, just Millennials in general, while I am on my way to making a very important point:

EDS is a very difficult disease to understand. 

Rare diseases, especially genetic ones, can be so complex. Doctors (they are only human!) do not have the time to become educated about it. How would they even learn about EDS? Our disease is very poorly described and not well understood. I sure would like to see the description updated, not just the diagnostic criteria. Our disease can be severely disabling and we can have pain like someone dying of cancer.

A doctor would have to have a lot of EDS patients to appreciate the magnitude of our highly nuanced problems. If they see only one of us, they think that one patient is just crazy. But if they see a lot, they realize, no, this is EDS. They are all like this! Huh!

You, the EDS sufferer, must go to an Ehlers-Danlos Learning Conference if you can. It is a place to feel normal. Yay!! We get to meet each other and learn directly from the few doctors that care about us and study us. The EDS Society puts those on once a year, and won’t you make a donation? The EDS Society replaced the EDNF. They are the ones pushing research forward and spreading awareness. They are doing a marvelous job. 

Here I am with our tireless advocate, Lara Bloom, who I had the privilege of meeting on a humid day in Irvine at Global Genes 2018, my favorite event, one for all rare diseases, which I just realize I have not yet posted about so I must work on that! Ugh, so behind! Thank you for everything you do, Lara! 😘😘😘

Ehlers-Danlos Anxiety is real. And horrendous.

Per the podcast I linked above, Lena Dunham is entirely unaware of the connection between Ehlers-Danlos and anxiety, which is no fault of her own. Most doctors don’t know.

She totally made me wish I had tried obliterating myself with anti-anxiety meds, but when I was growing up, no one offered that to kids. I think I could have gotten a lot more done when I was younger, before I completely fell apart, if I’d had access to benzos. EDS anxiety is crippling. On top of our intractable pain, something about that loose connective tissue traumatizes the nervous system and we all have symptoms of PTSD. EDS is a disease of agony and torture.

I thought I knew everything about Ehlers-Danlos, but I found there is so much more to learn when I attended the 2017 EDS Learning Conference. Dr. Antonio Bulbena, a psychiatrist from Spain, has written an entire book on us, about what strange creatures we are. Unfortunately it is in Spanish so I have not yet read it. I heard Dr. Bulbena speak a couple of times at that conference. One of the recordings is linked below. He was so lovely, I found him later and gave him a big hug. I love a cuddly looking psychiatrist, and he cares about us so much! 😘😘😘


Dr. Antonio Bulbena, EDS Learning Conference 2017

At 31:25, you can hear me ask Dr. Bulbena perhaps the most important question ever asked about EDS.

You go, Lena! 

EDS sucks and I wish Lena the best. She is an extraordinary writer, and her accomplishments over un-diagnosed Ehler-Danlos are truly inspiring.

I stand in awe.