Gumby Knees, and more…

Note: Don’t try these poses at home!

Last week I had a few moments when I stopped and thought about the term “double jointed”.  I got to thinking about it because the New York Times had an article in which they referenced a family that had “gumby knees”.

When I was growing up I was double jointed.  I used to think it was pretty cool that I could make my thumb touch my wrist.

But then, when I was about nine, I was running around in recess and – BAM – I hit the ground. I had no idea what happened, but my KNEE HURT.  I screamed “I BROKE MY LEG, I BROKE MY LEG.” 

Silence.  Time stopped.  I was carried to the nurses office and my mother came to school.  I was so embarrassed – at age 9.

And I learned that my mom had bad knees, and that I probably was getting bad knees too.

Before I was 12, I dislocated my left knee.  Badly.  Then I dislocated my right knee.  Badly.  When I say badly, I mean that my knee cap went for a visit to the back of my leg. 

I have never seen, felt or otherwise been as sickened and in so much pain as the pain caused by a profound dislocation of my knees.

By the age of 13, I had profoundly dislocated my knees multiple times.  One time in Bishops Hall Library.  My poor friend Stephie.  She came up from behind me to hit my knees (to make them buckle, as a joke – she had no idea I had bad knees) and before you could say “BOO” I was on the ground.  Knee out of joint.  Again.

So before the age of 14, I had knee release surgery

It kind of sucked growing up with bad knees.  Let’s face it.  Kids are mean.  In freshman year of high school a group of girls I thought were my friends** grafittied one of the bathroom stalls in McNeill Hall “Deformity Donna” with illustrations of a knee off to the side of a stick figure leg.  Yep. Cruel.

Thank god I found the beach, swimming, and frankly, a new set of friends.  And I decided that exercise was not my thing.  I mean, why subject myself to pain and cruelty?

Fast forward.  In 2003 when I decided to do charity fundraising walks, I kind of got the exercise bug.  And as you know, this led to my diagnosis of CMT in 2004.  And my aspiration to do triathlons.

But bad joints didn’t just go away.

In 2007, I fell.  Stupid really.  And when I hit the ground, wouldn’t you know it – my elbow went out of joint.

2007 was the year of my first triathlon, it was June, my race was in August, and I had dislocated my elbow.  I did it two more times before August.  But I still did the London Triathlon – before my MRI scans had been returned.  Thank goodness, as I had shredded my ligaments.  And thanks to a good surgeon, I was put back together again.

Left arm surgically repaired to “normal”, right arm still bendy…

In the 2004 – 2007 timeframe I got my diagnosis of Ehlers Danlos Syndrome (benign hypermobility, or bendy joints as I grew up calling it).  I still don’t know much about Ehlers Danlos Syndrome – except that it is a disorder of the connective tissues, it is genetic, its diagnosis is regularly missed, and I am pretty sure that is what the researchers were seeing in the New York times article I read last week on ACL injury being inheritable.

I was diagnosed using the Beighton Scale and Brighton Score.  I hit 9 out of 9.

I haven’t had a full blown dislocation since 1984 – but my knees (in particular my left knee) still track laterally, and I often sublux or slip my left knee partially out of joint. 

Knee bending backwards – and CMT feet – a double photo!

When I had my surgery in 1984, I was told I would never ever run again.  I was told to be careful and take it easy.  So I did.  Until 2009.  25 years later. 

Running has not been without problems.  But thankfully I see an awesome sports therapist, Michael Collins, who after 3 years I trust enough to work on my knees.

You see, if you have knee problems, you don’t want anyone messing with them.

But Michael is magic.

While holding my knee to ensure that it stays in place, he works to release tension on my patella tendon (a result of my tight rec fem muscle from running – folks with my nerve disease CMT tend to use their hips for running/walking rather than pushing with their quads and calves).

Yes, Michael is still wearing his Ironman Lanza finisher wrist band!

He has also worked on my medial quad – I finally have one of these, after about a year of solid training! 

Tomorrow I am seeing a physiotherapist to try to work on muscle imbalances which may be leading to stress on my knees with my return to running.  Great stuff.  Progress and fine tuning – that is what the off season is for! 

And… what of all of my rambling?  Of course I have some thoughts…

1.  I really hate articles like the New York Times.  It is copy for the sake of getting copy out there, stopping short of raising the real issue – that connective tissue disorders are real, that doctors regularly miss the diagnosis, and that they are hereditable.  And she called the Anterior Cruciate Ligament a tendon.  Sloppy sloppy sloppy.

2.  How many people have benign hypermobility?  My guess – LOTS OF PEOPLE.  Lots.  Just from sporadic interactions on Twitter I have met quite a few, and heard of others.  There are great folks out there like Rob who are doing their best to fundraise and raise the profile of Ehlers Danlos Syndrome / Benign Hypermobility Disorder.  I know I don’t really write about my own experiences with these problems a lot – but I’m thinking of doing so a little bit more, just to lend a hand to the awareness building that needs to happen.

3.  Surgery like I had at age 13 is dramatic.  Any surgery is invasive – of course if there are alternatives these should be pursued.  But for me, surgical intervention worked.  I don’t think we should all dismiss surgery off hand without considering the specific case and individual.  This little thought is as much for doctors as for friends and family, and outsiders who judge…

4.  To all the doctors and other sufferers (of CMT and hypermobility) who told me that I would never run… Pshaw!  Exercise for people with conditions and ailments – whatever those might be – IS POSSIBLE.  It is just that we might not be able to follow a typical plan to get strong.  For example, Couch to 5k plans typically have about 12 weeks to take someone from zero to race.  For me, to do a 5k sensibly and without injury, it took about 10 months.  Of hard work.  Commitment.  Focus.  And, yes, a little pain.  But with time and focus ANYTHING IS POSSIBLE.

5.  Find a team.  Make one.  Get everyone on your side that you talk with – doctors, physiotherapists, your local running shop, your friends.  I am really lucky in that I have a huge amount of support from my team – and that my personal team includes an awesome coach and sports therapist.  With the right amount of support I am convinced that anything is possible.  And I am convinced that when it comes to activity, ANYTHING is better than NOTHING.  If you want to exercise, seek support from others with your condition, from your doctors and from anyone who is willing to take the time and patience to work with you and your body. 

6.  Don’t be afraid.  It is hard to take the first step into a running shop, to seek advice on shoes, to explain the problems you have.  Go with a friend.  Ask around for recommendations for shops which have great customer service.  But don’t be afraid to ask for help from experts.  And don’t be afraid to tell people what you are dealing with – only through educating others can we build our own support and hopefully make it easier for others with similar conditions. 

Good luck.  And feel free to drop me an email if you want to discuss anything in this post in more detail and outside of a public forum.  .(JavaScript must be enabled to view this email address)

**PS: Those friends of mine that graffitied the bathrooms?  Well, the “ringleader” apologised a few years ago.  And of course I accepted her apology.  It is never too late to show someone compassion, and to right wrongs.


3 responses to “Gumby Knees, and more…”

  1. Has Anyone looked at ehlers danlos syndrome? I have severe hypermobility and lax joints. (My shoulder subluxes and sometimes straight up dislocates when I sleep). I had a friend diagnosed with it and as soon as I can, I’m getting referred to a rheumatologist to see if i have it and what treatments can help mitigate injuries.

    • Hi Tiffany. Thanks very much for your comment. As you can see in the post, I have been diagnosed with EDS. I see a great sports rehab doctor who is a rheumatologist and highly recommend finding a good person, he really helps me to come up with strategies to manage my joint issues. Good luck!

  2. Hello –
    I too have Ehlers-Danlos (Hypermobility) and Charcot-Marie-Tooth disease (type 2). I am so surprised to hear that you are able to run (that’s awesome)! I no longer have the strength in my legs to run (it’s like they just can’t move like that anymore)!
    I was wondering though, if you have any suggestions on kinds of exercises that you do.
    I’ve had 4 shoulder surgeries (twice on each shoulder) and my left knee has been rebuilt (PCL tear).
    Any tips on safe, effective exercises would be so much appreciated.

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