Ehlers-Danlos Syndrome

For a long time I’ve known in the back of my head that I have hypermobile joints.  That was why I could do strange things with my knees and elbows and fingers.  I had an orthopedic surgeon tell that as I got older my joints would stiffen and the hypermobility would go away.  I thought that was the end of it.

 

Recently I started looking things up.  Not only is this Syndrome a lot more than just loose joints, it could explain my breastfeeding pain, several unexplained pains I felt during pregnancy, how weak I felt after birth, and all the pain I feel in the course of a normal day.  I had no idea my low blood pressure had a cause.  I had no idea my soft skin had a cause.

 

This could also drastically shorten my life expectancy.  And it’s hereditary, and dominant.  Most of the research indicates that the type of EDS (there are 6 types, only one is likely to shorten life expectancy) you have is the only one your children could inherit.  But, when I read support group discussions, I can see parents whose children have a different EDS diagnosis than they do.

 

The dangerous one affects the vascular system.  Beginning in your third or fourth decade of life, blood vessels can start rupturing.  One common trait of people with this type of EDS is easily damaged skin.  Since reading this, every time I look at Aliza and see her little scratch marks on her face or head, I wonder if she only has 30 or 40 years to live.

 

When Adelaide trips (poor joint proprioception is common among several types of EDS) I wonder if she’s going to break something (brittle bones is common with EDS).  When she says her ‘toes are grumbling’ I worry that she’s feeling the same pains that I am.

 

I’ve only been researching this a very short time.  These panicky thoughts might die down as I become more accustomed and familiar with the knowledge of EDS.  I might be able to convince myself that my kiddos are very normal kiddos and not beginning short lives of intense pain.

 

But right now I’m worried.  And I hurt.  And for once in my life I feel like I can say that with confidence.  Other people are not feeling this way and continuing to go about their lives.  They’re aren’t stronger than I am or sucking it up.  I am not lazy.  I do not understand why “I hurt” was met with “Stop being lazy” but that is a common response from parents to kids with EDS.  And I internalized it.

 

You know what?  I’m not lazy.  You know what else?  I’m not a wimp.

 

The pain I felt during pregnancy that I was told was ‘simple growing and stretching’ was likely my rib dislocating.

The pain that I feel in my knees and hips put many people into wheelchairs.

The pain I felt/feel breastfeeding is only ameliorated with nerve numbing pain killers.

 

My reality is not a result of my shortcomings.  My experience is not all in my head.  I am not crazy.

 

And that validation is incredible.  Though it doesn’t help with the weight that I have two daughters with a 50/50 chance of experiencing the same things.

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