It's EDS Awareness Month!

No, it is NOT erectile dysfunction syndrome awareness month, nor is "EDS" an acronym for that! EDS stands for Ehlers-Danlos Syndrome and May marks a special month of awareness for this life-altering genetic connective tissue disorder which often results in extreme joint hypermobility and frequent dislocations among myriad other symptoms. I did not learn I had this condition until long after my POTS diagnosis. Many people with EDS also suffer from dysautonomia as a secondary condition. My POTS and TMJ are likely both linked to EDS as an underlying cause.

As a former ballet dancer I have always been very flexible. And that was a major attribute growing up. But never realized I had stretchy skin until an orthopedist pointed it out. And more importantly, I never realized that these seemingly harmless traits would predispose me to other serious health issues like POTS. I am very fortunate that my joints seem to be holding up okay so far (knock on wood!) and feel for all the EDS patients who have already had multiple joint replacements at my age or younger. EDS manifests differently in each patient although most of us share those hallmark traits of flexible skin and joints. Some people have very severe cases which can result in disability and even death, and others are plagued by milder cases that don't impose a major impact on daily life.

If you are extremely flexible and suspect you or someone you know may suffer from EDS, please talk to your doctor about it. And consider getting a referral for genetic testing. Diagnosis can lead to more comprehensive, tailored treatment and can help doctors and surgeons determine safer means of treatment. For instance, when I was struck with appendicitis and found myself in an emergency situation, I was able to inform the surgeon and anesthesiologist of my EDS before surgery. They took extra special care of me because of my EDS diagnosis, paying careful attention to the position of my jaw during surgery, as it is prone to dislocations. Knowledge is power. Take ownership of your health to help your healthcare team provide you with the best care possible!

Zebra Boots!!!

These delightful Ugg boots retail for $240, but will likely last forever.

For a similar look, try Target's rain boots for just $29.99.

Two perfect ways to wear your zebra pride this season!

Perfect Turnout Comes With A Price

As any ballet dancer knows, perfect turnout is considered paramount to being successful in the ballet world. Here is an example of picture perfect turnout:

Now, for many of us with EDS, this position comes naturally. It always did for me. As a child my ballet teacher was often impressed by my innate "perfect turnout" and would use me as an example to demonstrate for the rest of the class. A few of my peers were able to easily emulate this ideal turnout, and others could barely get their feet to point anywhere but straight forward. They were probably the "normal" ones in the bunch. Little did my teacher know that I was simply a genetic freak anomaly who didn't have to work to acquire this turnout at all. I loved ballet. It came pretty naturally and I was able to use my body as a vessel for self-expression. Had I have known that I may have been doing more harm than good to my body though, perhaps I wouldn't have let my teacher work me so hard. Perhaps I wouldn't have danced ballet at all actually.



Everytime I watch Dance Moms and see Brooke Hyland engage in her picturesque contortions I can't help but wonder if she has EDS and want to warn her to slow down now because her body will thank her for it later. I worry that any child who exhibits extreme hypermobility may be at risk for extreme pain, suffering and even surgeries later in life. Especially if the hypermobility is encouraged by demanding teachers (like Abby Lee Miller!) or even parents who don't realize the potential consequences of overstretching their children.



Perhaps someday the medical population will realize that EDS is much more common than the literature recognizes and start testing for hypermobility routinely at physicals. They should definitely start screening for it at ballet schools, gymnastics gyms, etc. If nothing else, early screening may enable parents to help their kids protect their joints through good practices and bracing at an earlier age, thereby prolonging the life of a problematic joint.

Instead it is often considered cool to share these party tricks with others. In fact, our culture values hypermobility on display. Everytime I watched street performer and self-described extreme contortionist hiphop dancer "Turf" do his thing on America's Got Talent I couldn't help but root for him. Not only was he a likable guy, it also seems likely that he will endure some medical problems down the road as a result of his dancing now.


Disclaimer: It probably goes without saying, but just in case you're new to this blog I should mention that I am not a licensed physician and therefore not qualified to make medical diagnoses for any of the aforementioned individuals based on what I have seen them do on TV. They may or may not have ehlers-danlos syndrome.

Top 10 Dumbest Things Doctors Have Said About POTS/EDS Diagnosis

Earlier today it occurred to me I have encountered some really, ridiculously dumb doctors these past few years. I seriously wonder how some of them ever made it through medical school. I figured I should compile a top ten list while I'm thinking about it so I don't forget some of these gems. Good for a little comedic relief. I actually laughed out loud in their offices at a few of these.

10) "Is it too late to join Cirque Du Soleil?"--Sleep Medicine Doctor upon hearing about my EDS diagnosis

9) "Just stand up slowly and don't do squats or you might pass out."--Primary Care Provider's advice on how to manage POTS

8) "You're so flexible you shouldn't be in any pain. Only stiff old people like me have pain."--Primary Care Provider's response to dislocated jaw

7) "Here's some tissues and a prescription for valium. Have you ever seen 'Valley of the Dolls?' That was a good one."--Primary Care Provider's treatment for dislocated jaw

6) "I'm going to get you something hard to bite down on for whenever you're in pain."--Primary Care Provider's prescription for TMJ pain

5) "Surgery never holds on people like you."--Orthopedic Surgeon examining my joints

4) "Oh wow--your elbows! That's pretty wild!"--Physical Therapist upon joint evaluation

3) "That is the only joint in the body we never learned about in med school."--Orthopedist in regards to the TMJ

2) "Trust me, I'm just as scared as you are!"--Anesthesiologist 5 minutes before my appendectomy

1) "Go home and take it easy. Try to get some rest."--Just about every doctor I've ever seen. Don't they think I've tried that already?

Beat the Summer Heat with a FaceCaddy!

As a chronic TMJD sufferer with EDS I have been enjoying my FaceCaddy for several months now. The last few days have brought warmer weather and I once again realized just how great this product really is, not just for pain relief but for temperature regulation as well. Regardless of whether you have headaches or jaw pain, the FaceCaddy renders ice packs easily wearable, which is perfect for potsies in hot weather! I suffer from extreme heat intolerance, as do many other dysautonomia patients. The relief this product provides is tremendous. Due to the FaceCaddy's insulation, the ice packs stay cool for a long time without having to swap them or refreeze them.

I love this product, and am going to give away another zebra FaceCaddy to one lucky reader to celebrate the summer solstice!

To enter the Summer FaceCaddy Giveaway, please leave a comment below and let me know why you'd like to win! Also be sure to list your name and email address.

Entry deadline is July 10th. I will draw a name from my big floppy beach hat and post the name of the winner here on Defying Gravity, so be sure to check back after July 10th. Winner will be selected at random.

*You will automatically receive one bonus entry if you entered my first FaceCaddy Giveaway in honor of EDS Awareness Month.

*Anyone can receive an additional entry by sharing this giveaway post on Facebook.

Thanks for reading and good luck! :)

If you can't wait until July 10th and want to order a FaceCaddy now, purchase any CaddyWraps product online at CaddyWraps.com and enter "Take5" in the coupon code for $5 off your order!

Zebra FaceCaddy Giveaway for EDS Awareness Month!

I am thrilled to introduce this product to my fellow zebras and readers everywhere! I don't endorse products on my blog unless I feel very strongly about them. The FaceCaddy is one of those life-changing products that I can confidently recommend without reservation. It's a safe, med-free, non-invasive and affordable remedy for many different ailments including TMJ pain, migraines, sinus headaches and even hot flashes! Every EDS patient should have one of these on standby in the medicine cabinet.

A FaceCaddy user myself, I can attest to the quality and effectiveness of this product. The technology behind the FaceCaddy is simple and time-tested: ice and heat therapy are safe and effective treatment approaches that have been widely used by physical therapists, chiropractors and Md's for years. What makes the FaceCaddy so revolutionary is the fact that it renders hot/cold therapy completely portable and convenient: you no longer have to lay on your side while awkwardly holding a bag of frozen peas against your face for twenty minutes at a time. Instead you simply strap on the lightweight, wearable FaceCaddy and go on about your business while still reaping the benefits of hot/cold therapy which include pain relief, reduced inflammation and muscle relaxation.

As most of you know by now, I have been suffering from TMJD for nearly five years and have tried several different treatment approaches (most are costly, painful and largely ineffective) only to find myself right back to where I'd started from: with ice and heat therapy. Admittedly, when I'm in bad pain, I find it hard to muster up any patience. One of the reasons hot/cold therapy never worked well for me in the past was because I never had the patience to hold the ice or heat up to my head for long enough to relieve pain, reduce swelling or relax muscles.

Now that I wear the FaceCaddy, my impatience no longer poses a threat to the effectiveness of ice/heat therapy. If I'm having a really bad TMJ flare-up I often sleep with the FaceCaddy on. It's comfortable, soft and insulates the hot/cold packs so that they stay cold or warm for a long period of time without having to constantly re-freeze or re-heat them. A major bonus so you can truly relax while wearing it.

In honor of Ehlers-Danlos Syndrome Awareness Month I will be giving away a brand new FaceCaddy in zebra print with neon pink trim courtesy of FaceCaddy creator himself, John Lucas, who generously donated this product to share with my readers and commemorate EDS Awareness Month.

To enter the Zebra FaceCaddy Giveaway, simply:

1) Become a follower of my blog.

2) Post a comment below this post and tell me why you'd like to try a FaceCaddy.

*If you're already a following my blog then please post a comment on this post and any other post of your choice by May 19th, 2012.

To get one more entry in the giveaway contest (your name will go into the hat twice!) please share this post on Facebook.

The deadline to enter this giveaway is Saturday, May 19, 2012.

Good luck! The winner will be drawn from a hat and be announced here on Defying Gravity after May 19th.

In the meantime, the FaceCaddy is available online in four lovely fabrics: zebra, pink, black and paisley. Retailing at $24.99, this is one small investment in your health I promise you won't regret.

FaceCaddy is made by Caddywraps. They also make the BackCaddy which utlizes the same portable hot/cold technology and provides gentle compression (would have worked great after my appendectomy and will no doubt be my next CaddyWraps purchase!) and the EyesCaddy which works wonderfully for migraines and light sensitivity. To purchase any of the CaddyWraps products, visit CaddyWraps.com.

May is Ehlers-Danlos Syndrome Awareness Month!

What is everyone doing to spread awareness this month?