Friday, October 7, 2016

10 Benefits of Having Ehlers Danlos Syndrome

10 Benefits of Having Ehlers Danlos Syndrome

I'm going to be honest.  Having Ehlers Danlos Syndrome stinks.  It's painful, it makes you sick, and it's just not fun.  But there are a few benefits to it if you look hard enough...

You just have to look really hard.  Really, really hard.

Disclaimer: Just because we can do the "party tricks" shown in the pictures does not mean that we should.  Katie and I only did them for a few seconds for the pictures.  If you have EDS, please don't try any of the following! 

1. Being able to scratch any spot on your back.
You know that spot on your back that you can't reach to scratch?  I don't!

10 Benefits of Having Ehlers Danlos Syndrome
Photobomb courtesy of Davy

2. Fast labors. 
This isn't something that I've had (my shortest labor was still over 12 hours), but a lot of other women who have EDS reported experiencing this.

3. Young appearance.
EDS can make you look younger than you are.  This has only recently become a benefit for me since I got a little tired of people assuming I was a teen mom with a bunch of kids.

4. Yoga is pretty easy!
It's not actually recommended for most people with EDS because of the danger of overextending their joints, but if we could do it, we'd be really good at it thanks to our natural flexibility.  Ever seen anyone do a reverse Namaste? 

Reverse namaste - hypermobility

5. Soft, smooth skin.
I'm not lucky enough to have this one, but a lot of people with EDS are.

6. Putting toenail polish on is a piece of cake.
This one mostly tends to benefit women...

Available in the Sunshine and Spoons Shop

7. Zipping up back zippers.
Yup, most of us can do this too!
10 benefits to having Ehlers Danlos Syndrome

8. Easier to play guitar and other instruments.
Have a hard time making your fingers go in the right places for that tricky chord? Hypermobile fingers will fix that problem!

Hypermobile fingers
Katie's hypermobile fingers

9. Human weathervane.
We can predict changes in the weather due to the increased pain in our bodies.  Yay.

10. Freaking people out with the weird things you can do.
When I bend my knees backwards, I generally encounter one of the two following responses: "Woah! That's cool!" or "*gag* Stop doing that! It's awful! *gag*"

Hypermobile knees - Ehlers Danlos Syndrome
My knees bent backwards.

Do you have a medical condition, either Ehlers Danlos Syndrome or another one?  I'm challenging you to find some pros.  Also, don't forget to check out the wide selection of EDS themed shirts, mugs, and awareness products in the Sunshine and Spoons Shop!

10 Benefits of Having Ehlers Danlos Syndrome
Random picture of Davy because he insisted on having his picture taken too and because he's cute :)


  1. EDS has been a great help when playing the piano. Not so much with the guitar. My fingers dislocate when I try to set a chord. I have learned to learn more classical guitar to help with this. Bummer. Don't forget being able to shave legs standing up in a tiny shower if you can lean on something!

  2. The pros for me aren't so much physical ones (because I can't scratch my back or zip up back zippers, for instance), but more things such as creatively solving daily problems (I can't open the cans of cat food that has a pull of lid without bending the lid open with a knife), adjust situation and adjust to situations faster than others around me, I'm more tolerant to too much information because my life mostly consists of TMI stuff (so my friends knows they can talk about their health regardless of what it is), I've become patient because things can require a lot of tries for me, and so on.

  3. As someone so sick from this I'm stuck in bed on my Daughters 16th birthday ...I find nothing good about it. Zero.

    1. Anon, I can sympathise there. Just celebrated my son's 16th. I managed to make it far enough to lie on the sofa for the day.

  4. making corsets from gaffa tape and not needing someone to cut you out ... might of forgot to mention this to someone I told how to do it and they may of got selves stuck ... ps this may be more of benefit for goths and punks

    Not breaking anything as a child cause everything bent out off way and didn't snap.

  5. Man do I agree with your pros :-) I'm still technically waiting on my official EDS dx, but I've been dx'd with joint hypermobility syndrome (and there seems to be some debate about them being the same). I just posted a picture of me doing the reverse namaste to my Instagram!
    I cannot, however, bend my knees backwards. But I can do plenty of other freaky things :-P
    I also agree with a lot of the other posters! Needing to be creative with daily tasks (I also use a knife to open pop top cans, woot) and no broken bones for sure.
    Can't really think of anything else at the moment as I'm suffering from some major complications right now. But I love this post!

  6. In over 15 years of dirtbike accidents, I've only broken one wrist.

  7. Wow, tjank you for the post. I am searching for a diagnosis for almost two years now, but just realised I might be hypermobile. I can do all those things without problems, exept bending my knees backwards.

  8. I just came across this artical. Myself and 3 out of 4 children have been diagnosed with EDS3. Even though I feel exhausted and in pain on a daily basis it is quite nice to read articles like this one. No matter how hard life gets, there is always something positive that you can find, if you look hard enough.

    Right now, the emotional things in my life outway, as well as add to the physical. My husband is having to leave next month with work for 9 months, and my 18 year old daughter decided to marry into the military on the 2nd of this month, and is moving almost 9 hours away next month, around the time my husband leaves. With 3 other children, and the pain that driving long distances puts on my body, I can expect a 9 hr drive to turn into a 14 hour one. Longer if I have to stop and get a hotel room half way down.

    I want to be there to help her unpack and start her new life, but I know that at this time I will not be able to.

    Sometimes it is hard to find the positives. But, they are there... Let's see, my daughter will have great medical insurance through her husband, my 7 year old hasn't dislocated his knee in over a year, my 9 year old has had less back pain over the past month, My 14 year old does not have EDS, I am blessed to be able to homeschooling my children, and have graduated one that hopes to start college in the fall for criminal psychology. Both of my parents are alive and healthy, and I have a new one month old nephew, so I am officially now an aunt. Also I have 4 children that truly care for those around them. Last, but most important, I know that no matter what God is always with me, and with Him by my side, I can make it through any obstical.

    1. Attitude is half the battle with EDS, isn't it? It's an awful condition to have, but there's always something positive to find in life and I'm so glad that you're looking for the positive!

  9. In 2003, I was diagnosed with EDS. My consultant explained to me that I had a Hypermobility Syndrome, called EDS. She said use the former name, however, as it is easier to understand. So that's what she put in my notes. Fast forward to Christmas just gone and, after 15 years of practically no treatment (for reasons! It's very complicated but basically meant I have been bedridden for most of those years) I was sent to be reassessed. After over ten years confined to a bed, without any treatment to prevent it, even a hypermobile person will have developed contractures. Plus a number of joints are permanently damaged by the frequent dislocations which is going to affect their mobility as well. As a result of this (and the Doctor testing me while I was wearing support braces didn't help either) my Beighton score of 7/9 (my knees were right on the borderline, they do bend backwards but not past the specific angle the test requires) has dropped to a 2! Which means I suddenly DON'T have EDS or any hypermobility disorder after all! Now I have no diagnosis and am back on the old "hypochondriac train", and all the comorbidities associated with EDS that I also have are now all unexplained.
    So there's a HUGE benefit to having EDS. You know it's not psychosomatic, you aren't a hypochondriac, you have a serious medical condition. (And yes I can still do all the things in the pictures. With the linking hands between the shoulder blades, when I was younger I could clasp each hand around the wrist of the other. Only problem is, when I do that now, I dislocate both shoulders!)

    1. That's awful!! Obviously the doctor who re-tested you didn't know what they were doing because the question is supposed to be if you are hypermobile now or WERE IN THE PAST. I'm so sorry that you're back to no diagnosis even though we know very well that you have EDS.

    2. The Beighton Score uses the 9 point checklist, the Brighton Scale and the NEW 2017 Diagnostic Criteria almost all say "Can you now or could you ever" so you are STILL EDS despite now having contractures etc.
      I have had multiple surgeries tightening (and in many cases either purposefully over-tightening or changing/ not doing the normal rehab post op to create a partial frozen joint to cause less range of movement.

      If you were diagnosed with EDS they cannot just take that diagnosis away if they think you are no longer flexible enough...


    3. Thank you both! The whole collapse of diagnosis would never have happened if the consultant hadn't considered EDS and JHS to be the same thing. Unfortunately she did. What drives me mad is the way the doctors pick and choose which information they want to listen to. For me to have been diagnosed with a hypermobility syndrome, I MUST have "passed/failed" the Beighton test. And, as you pointed out, it asks "could you ever" in the diagnostic criteria. So if a consultant confirmed that I had a 7/9 on that, even if it was years ago, it should still be valid for the diagnosis. Oh well, hurry up second opinion appointment!

  10. I was diagnosed with EDS a year after being diagnosed with FSH Dystrophy, a rare(er) type of muscular dystrophy. I have another rare genetic disorder too, so we just say we don't have a genepool but a cesspool in my family. You have to laugh and find the bright side of things.

  11. I think of it in a more holistic way, I'm flexible and unique in many ways - some good, some bad but opposites need each other and cannot be separated. I can adapt to new things, new places, new people - 5 countries in 5 years. I've wasted less time with doctors, physios, rehab and now have cool memories and friends around the world. I find something to love about each new place but hear healthy people complain about trivial things. I backpacked Switzerland and Italy because they told me I probably won't walk much longer. Not that pain, falling etc is good but it reminds me of my mortaity every day and stops the busyness. It's easy to be hit by a bus in London tomorrow so life is short no matter what. I have more time for people... Even strangers and jerks. Tolerance, patience and a unique sense of time. It has made me more creative, appreciate nature, art, music and silence. Of course I've often been stuck in bed or just at home. So hopefully by next year I'll finish my phd and my book. I think of myself as a canary down the mines, sensing change before others do, I may not be able to fly but I can sing.

  12. Basically I can apply my own sun cream to my back! Yay


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