Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Fate, Family, Answers, & Genes

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Memorable Experiences, Questions

Ehlers-Danlos Syndrome is genetic.  Of the genes. Often inherited (though not always). This, I get.

What I have always wondered is if my EDS was in fact inherited, where in my family did I get it from?

My siblings don’t have it.  My parents don’t have it.  For three years, I have not known of anyone on either side of my family who has EDS.

This has never been something that has kept me up at night, but in the back of my mind I always wondered.   If I am being honest, I always thought I got it from my Dad, although I just assumed he was asymptomatic.  He is very hypermobile, and I have pretty much taken after him in everything else; looks, personality, sense of humor…you name it.

Well, this all changed this weekend when I received an email to my Life as a Zebra account.

The subject line was: Fellow EDS’r! I Think We are Cousins!

When I read the title of the email, I thought this person had found my website, realized we had very similar stories, and was therefore, using the term “cousins” figuratively.

Then I opened it and as I read, I realized I was wrong, wrong, wrong.

Now, this could get confusing so please try and stay with me while I attempt to explain.

This woman, Caroline who also has EDS and POTS introduced herself and explained that my Mom’s first cousin, Brian, was visiting her grandmother in Florida recently.  Her grandmother was explaining to Brian about Caroline being diagnosed with EDS and POTS.  Well, it just so happened that in October I went to Boston with my family to celebrate my cousin, Celine’s wedding (Celine is my first cousin on my Mom’s side).  Brian was the person who officiated the wedding.  At the reception, I ended up talking to him at length about EDS and POTS, and the work Allie and I are doing to raise awareness for EDS, Dysautonomia, and Vasculitis.  He even said he would start making plans to come to Michigan in April for our benefit concert.  So, when Caroline’s grandmother told Brian about these diseases that Caroline was also living with, he was taken aback because he had heard of these “rare” diseases in his family before. Brian and her grandma ended up calling Caroline to tell her about me.

Crazy.

In Caroline’s email to me, she explained many of her symptoms:  chronic pain and fatigue, having a difficult time standing and sitting, neck pain, migraines, disc and spine issues, TMJ, GI issues…It was like reading a list of exactly what I would include if I were asked to write a list of my day-to-day issues and symptoms.

I immediately called my Mom and told her all about it.  At first, she was also confused by the family connection, and what Caroline and my familial relationship would be.  She ended up calling her brother and as they talked, they figured out that we would be fourth cousins.

Feeling so excited about finding out all of this information after three years, I emailed Caroline back and shared what I learned.  I think I used quite a bit of Caps Lock, but it was super hard to contain my excitement.  I told her zebras need zebras; especially zebra COUSINS!

We ended up emailing back and forth a couple of times, with me explaining my treatment and management program, and she explaining the doctors she has seen and will be seeing for POTS.  I smiled when her last email said, “I think we might be the same person. Seriously.”

It is not everyday that you find out about a family member you did not know you had, let alone one who is living with the same two, chronic illnesses.

I am so thankful Caroline reached out to me, and I look forward to getting to know her more and more.  We both think a face-to-face meeting is in order, and this may just happen sooner than later.  Caroline is currently looking into plane tickets to come to Michigan for our Life as a Zebra benefit concert in April.

Life is crazy…Pretty incredible, actually.  I find it kind of ironic that I spent months seeking answers when I first became sick.  It took a lot of work, time, energy, and patience until I finally found them.  And then there was this lingering question of where (if at all) in my family my EDS came from.  Finding that answer took no work, no patience, no time, or energy. It just fell into my lap this weekend.

Some people may call it a coincidence.

I think I’ll call it fate.

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Comments (4)

  • Aburdzel

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    No one else seems to have it??? VEDS can go unnoticed for generations but after someone gets dx’ed a trail can typically be found. Very interesting there appears to be no trail.

    Reply

  • Aburdzel

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    EDS with POTS seems to be a given. There is also a higher incidence of MS as well. Depending on what type of EDS, Arnold Chiari is fairly common. Celiac disease would not be surprising or gastroparesis either.

    I am rather interested as to why your mom does not show signs of EDS if this cousin is on her side?

    Reply

  • Auntie Ellen

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    Katie, I cried all the way through reading this, and so glad you found Caroline and she found you. And may this amazing connection make the family even stronger.

    Reply

  • katie odaire

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    My mothers got mild EDS symptoms but ky sister and I have it full on, and many cousins on her side of my generation have it badly too. It seems in my family most of us at this generation have it worse than those previous, all my moms cousins just have fairly minor skin/double jointed elbows type symptoms.

    Reply

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