My wife died in 2008. It was the same year my daughter was diagnosed with Ehlers Danlos Syndrome (EDS). We have dedicated a new program in her memory at www.edsawareness.com. We are helping to form new EDS Support Groups and to create a directory of them. We are also hosting two monthly live EDS educational webinars.

My wife and I were married for 41 years. You’d think that after all of that time you would know everything there was to know about a person. I knew Carol was a loving person who would do anything she could for the kids and the family. She was a social worker and was very concerned about the comfort of others She didn’t complain and didn’t want others to worry about her.

The symptoms started shortly after we were married in 1967. Carol was a very energetic lady who had just graduated with honors and a master degree in guidance and counseling and she was anxious to start this new career. She also was somewhat of a perfectionist who wanted to keep the house clean and organized … but started to develop some pains as a result of all of this. I remember we attended the Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented at how flexible Carol seemed to be during the exercises. Our first daughter, Deborah, was four weeks premature and our second daughter, Deanna, was about seven weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.

Carol’s joint pain got more severe in the eighties. She was the first director of a new crisis hotline in the Cleveland, Ohio area and she was working unusually long hours. With all of these mental and physical stresses she was going to a chiropractor monthly and then weekly. She was getting massages on a regular basis. Initially, her neck, back and shoulders were the major issues. Then she developed chronic problems with her hips, knees, feet, etc. The doctors did not seem to understand her pain and they could only recommend pain medications, topical creams or muscle relaxers. It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe Fibromyalgia … but they were not sure.

She could only sustain working for a few more years with flexible hours, then it got to be too much for her physically.

She described her constant pain as “achey or throbbing”. She had frequent episodes of radiating pain, stabbing, ’pinched nerves’ and numbness. She would say things like ”I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body.”

She would describe affected parts of her body as shifted, twisted, crooked or her favorite word “dis-combobulated” (meaning everything is zig-zag and out-of-whack).

We had never heard of joint hypermobility or Ehlers-Danlos Syndrome (EDS). We did not know that her symptom descriptions were suggestive of unstable, loose joints.

Soon, I discovered that I was taking over the household tasks of cleaning, doing the dishes and the laundry. Some family members commented that Carol “looked perfectly fine” – so she must be lazy and just taking advantage of my help. I knew there was a problem with her pain, but I did not know what it was or what else to do to help.

In addition, Carol had severe environmental allergies, IBS symptoms and an extremely sensitive stomach. She avoided certain foods, spices, and oral medications due to this. Her allergies often put restrictions on where we went out for dinner or social activities and where we purchased certain items – always avoiding chemical odors, dust, pets and cigarette smoke, etc.

Carol had very flat feet and was prescribed orthotics. Her feet were always hurting and finding comfortable shoes was challenging. She had very sensitive hearing and was a very light sleeper. Even low volume noises or voices in the next room would wake her. Pain and disturbed sleep meant she always woke up exhausted!

Carol had a lot of extra pain if she tried to carry something that was awkward or too heavy (ie. weighing more than 2-5 lbs., depending on her pain level that day.)… By age 8 and 10, my daughters could carry heavier items than Carol could, so the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and got the kids off to school.

As a result of her sleep problems and pain, she was in bed until the kids got off the school bus. The girls would run upstairs to the bedroom, eager to spend some quality time with mom – as she was getting out of bed in the middle of the day. Moments like these with her girls gave her some comfort and support. The girls remember these as a special times, but they sometimes felt embarrassed – they could not tell anyone that their mother was in bed all day.

Read more here.

108 thoughts on “My Wife Had Ehlers Danlos Syndrome and She Never Knew”

  1. John Ferman says:

    Regarding “My Wife Had EDS and did not know it”

    This month, March 2018 is the 10th anniversary of Carol’s passing!

    So many of us are struggling with this dreadful disorder.

    In honor of her memory we now have 115 EDS Support groups world-wide at http://www.edsawareness.com.
    We have over 75 patient oriented webinars, by EDS experts and we conduct live webinars monthly.

    In 2017 we launched an EDS Physician CME Educational program http://www.eds-cme.org.
    We have a Nurses EDS Educational program planned for 2018.
    Kind Regards to all of you,
    John & Deanna

  2. I’m not sure where you are getting your info, but great topic.
    I needs to spend some time learning much more or understanding more.

    Thanks for wonderful information I was looking for this information for my mission.

  3. This is a topic that is near to my heart… Many thanks!
    Where are your contact details though?

  4. What’s Going down i am new to this, I stumbled upon this I have discovered It absolutely useful and
    it has aided me out loads. I’m hoping to contribute & aid other customers
    like its helped me. Great job.

  5. For latest news you have to visit internet and on world-wide-web I found
    this site as a finest web page for most up-to-date updates.

  6. You are so interesting! I do not think I’ve
    truly read something like that before. So great to find someone with a few genuine thoughts on this subject.

    Really.. thanks for starting this up. This website is one thing that’s needed on the web, someone with a little
    originality!

  7. how to says:

    Right away I am going to do my breakfast, later than having
    my breakfast coming again to read other news.

  8. I love what you guys are up too. This type of clever work and reporting!
    Keep up the great works guys I’ve incorporated you
    guys to my personal blogroll.

  9. It’s nearly impossible to find experienced people for this topic, but you sound
    like you know what you’re talking about! Thanks

  10. Hi to every , because I am genuinely eager of reading this webpage’s
    post to be updated daily. It includes good data.

  11. Wonderful items from you, man. I have remember your stuff previous to and you are
    just extremely wonderful. I actually like what you have obtained
    right here, certainly like what you are saying and the
    best way during which you are saying it. You make it enjoyable and you continue to take care of to keep it smart.
    I cant wait to learn far more from you. That is really a great site.

  12. Hey! I just wanted to ask if you ever have any problems with hackers?
    My last blog (wordpress) was hacked and I ended up losing months of hard work due to no
    back up. Do you have any solutions to protect against hackers?

  13. tutorials says:

    Hi, i read your blog occasionally and i own a similar one and i was just
    curious if you get a lot of spam remarks? If so how do you protect against it, any plugin or
    anything you can advise? I get so much lately it’s driving me mad so any
    support is very much appreciated.

  14. Hi there, its pleasant paragraph regarding media print, we all
    be aware of media is a wonderful source of information.

  15. If some one needs expert view on the topic of running a blog
    after that i propose him/her to visit this web site, Keep up the fastidious job.

  16. Good day! I know this is kind of off topic but I was wondering if you knew where I could locate a captcha plugin for my
    comment form? I’m using the same blog platform as yours and I’m having problems finding one?
    Thanks a lot!

  17. Hello, I want to subscribe for this web site to get latest updates, thus where can i do it please help out.

  18. Hi, its fastidious article about media print, we all know media is a wonderful source of facts.

  19. Hello, I think your website might be having browser compatibility issues.

    When I look at your blog site in Ie, it looks
    fine but when opening in Internet Explorer, it
    has some overlapping. I just wanted to give you a quick heads up!
    Other then that, very good blog!

  20. Howdy would you mind letting me know which webhost you’re using?
    I’ve loaded your blog in 3 completely different web browsers and I must say this blog
    loads a lot faster then most. Can you recommend a good internet hosting provider at a fair price?
    Many thanks, I appreciate it!

  21. Remarkable! Its genuinely awesome article, I have got much clear idea on the topic of from this post.

  22. What’s up to every , for the reason that I am in fact keen of reading this web site’s post to be updated on a regular basis.

    It contains pleasant information.

  23. Every weekend i used to pay a visit this web site, because
    i wish for enjoyment, for the reason that this this site conations actually nice funny information too.

  24. I was more than happy to find this site. I wanted
    to thank you for ones time just for this wonderful read!!
    I definitely loved every part of it and i
    also have you saved as a favorite to see new stuff
    on your blog.

  25. Hey, thanks for the blog post. Keep writing.

  26. When some one searches for his required thing, so he/she
    wants to be available that in detail, therefore
    that thing is maintained over here.

  27. tinyurl.com says:

    It’s a pity you don’t have a donate button! I’d most certainly donate
    to this superb blog! I guess for now i’ll
    settle for book-marking and adding your RSS feed to my Google account.
    I look forward to fresh updates and will talk about this site with my Facebook group.
    Talk soon!

  28. If you want to take a great deal from this piece of writing then you have
    to apply these strategies to your won webpage.

  29. hello!,I love your writing very much! share we be
    in contact more approximately your article on AOL? I need an expert on this house to unravel my problem.
    May be that is you! Looking forward to see you.

  30. Thank you, I have just been searching for info about this topic for a long time and yours is the greatest I have came upon till now.
    However, what in regards to the bottom line? Are you sure concerning the supply?

  31. I do trust all of the ideas you have offered in your post.
    They’re really convincing and will definitely work.

    Nonetheless, the posts are very quick for beginners.
    May just you please extend them a little from next time?
    Thanks for the post.

  32. Attractive portion of content. I simply stumbled upon your weblog and in accession capital
    to claim that I acquire in fact enjoyed account your blog posts.
    Anyway I’ll be subscribing for your augment and even I
    achievement you get entry to consistently rapidly.

  33. I do accept as true with all the ideas you’ve introduced for your post.
    They are very convincing and can certainly work. Still,
    the posts are very quick for novices. May just you please lengthen them a bit from subsequent time?
    Thank you for the post.

  34. Do you have a spam problem on this blog; I also am a blogger, and I was curious about your situation; we have created some nice procedures and we are looking to exchange methods with other folks, why not shoot me an e-mail if interested.

  35. Just wanna input on few general things, The website layout is perfect, the articles is very superb : D.

  36. Its like you read my thoughts! You seem to understand a lot approximately this,
    such as you wrote the book in it or something.
    I think that you could do with some percent to power the message home a little bit, but
    instead of that, this is fantastic blog. A fantastic read.
    I’ll certainly be back.

  37. natalielise says:

    Howdy! Someone in my Myspace group shared this website with us
    so I came to take a look. I’m definitely enjoying the
    information. I’m bookmarking and will be tweeting this to my
    followers! Superb blog and terrific design and style.

    natalielise pof

  38. whoah this weblog is magnificent i love studying your articles.

    Stay up the good work! You realize, many individuals are hunting round for this information, you could help them greatly.

  39. Hello there! This is kind of off topic but I need some help from an established blog.
    Is it very hard to set up your own blog?

    I’m not very techincal but I can figure things out pretty fast.
    I’m thinking about creating my own but I’m not
    sure where to start. Do you have any points or suggestions?
    Many thanks

  40. It is actually a nice and useful piece of information. I’m glad that you just shared this useful info with
    us. Please stay us up to date like this. Thanks for sharing.

  41. smore.com says:

    Hello, all the time i used to check weblog posts here early in the dawn, because i enjoy to gain knowledge of more and more.
    plenty of fish natalielise

  42. pof says:

    My family every time say that I am wasting my time here at net, however I know I am getting knowledge all the time by reading thes
    pleasant articles or reviews.

  43. I just couldn’t go away your web site prior to suggesting that I actually
    loved the standard information a person provide in your guests?
    Is gonna be back frequently in order to investigate cross-check new posts

  44. hey there and thank you for your info – I’ve definitely picked up anything new from right here.
    I did however expertise several technical issues using this site, since I experienced to reload
    the site lots of times previous to I could get it to load properly.
    I had been wondering if your hosting is OK? Not that I am complaining, but sluggish
    loading instances times will sometimes affect your placement in google and could damage your quality score if ads and marketing with Adwords.
    Anyway I’m adding this RSS to my e-mail and could look out for a lot more of your respective fascinating content.
    Make sure you update this again very soon.

  45. Hello my family member! I wish to say that this article is awesome, great written and include
    approximately all important infos. I would like to see extra posts like this
    .

  46. whoah this weblog is fantastic i really like studying your articles.
    Stay up the good work! You recognize, a lot of persons are searching around for this information, you could help
    them greatly. natalielise plenty of fish

  47. dating site says:

    I am regular reader, how are you everybody? This piece of writing posted
    at this website is really good.

  48. You’ve made some decent points there. I looked on the web for more info about the issue and found most people will go along with your views
    on this site. plenty of fish natalielise

  49. Free Sex Cam says:

    Would you like to see and talk to sexy girls for free? If so, then visit http://taraa.xyz/fl5

  50. What’s up, after reading this remarkable paragraph i am too happy to share my knowledge here with colleagues.

  51. hello!,I love your writing so much! share we keep up a correspondence more approximately your post on AOL?

    I need a specialist on this space to resolve my problem.
    May be that’s you! Having a look ahead to peer you.

  52. I’ve learn a few just right stuff here. Certainly price bookmarking for revisiting.
    I wonder how so much effort you put to create
    the sort of fantastic informative web site.

  53. Thank you for the auspicious writeup. It in fact was a amusement account it.
    Look advanced to far added agreeable from you!
    However, how could we communicate?

  54. Pretty! This was an incredibly wonderful post. Thanks for providing this information.

  55. After going over a number of the blog articles on your web
    site, I honestly like your way of writing a blog. I
    saved it to my bookmark website list and will
    be checking back in the near future. Please check out my website as well and let me know what
    you think.

  56. Your way of telling all in this post is actually nice,
    every one be able to easily know it, Thanks a
    lot.

  57. I am really impressed together with your writing talents
    and also with the structure on your blog. Is this a paid subject matter or did you
    customize it your self? Either way stay up the excellent high quality writing, it’s rare to look a great blog like this one these days..

  58. Pretty! This has been a really wonderful post. Thanks for providing this info.

  59. You actually make it seem so easy with your presentation but I find this matter to
    be actually something which I think I would never understand.
    It seems too complicated and extremely broad for me.
    I am looking forward for your next post, I will try to get the hang of it!

  60. It’s very effortless to find out any matter on net as compared to books, as I found this
    article at this web page.

  61. This is very interesting, You’re a very skilled blogger.I’ve joined your rss feed and look forward to seeking more oof your excellent post.Also, I hve shared your site in my sodial networks!

  62. Hi there it’s me, I am also visiting this web site regularly, this web site is actually fastidious and the people are truly sharing good thoughts.

  63. Nice weblog right here! Also your website a lot up fast!

    What host are you using? Can I get your associate link on your host?
    I want my website loaded up as quickly as yours lol

  64. I do believe all of the ideas you have introduced to your post.
    They’re very convincing and can definitely work.
    Still, the posts are too brief for beginners.

    Could you please prolong them a little from next time?
    Thank you for the post.

  65. Remarkable issues here. I am very happy to see your article.
    Thank you a lot and I am taking a look forward to
    contact you. Will you please drop me a mail?

  66. Your way of describing all in this post is truly nice,
    every one be able to effortlessly be aware of it, Thanks a lot.

  67. Great delivery. Outstanding arguments. Keep up the good
    effort.

  68. I am truly thankful to the owner of this web page who has shared this wonderful post at
    at this place.

  69. AntonioTease says:

    10 Best AU Dating Sites 2019: http://v.ht/tXhDrt?&frglz=14nirm6L2wVbdu

  70. It’s a shame you don’t have a donate button! I’d definitely donate to
    this superb blog! I guess for now i’ll settle for bookmarking and adding your RSS feed to my Google account.

    I look forward to brand new updates and will talk about this blog
    with my Facebook group. Chat soon!

  71. With havin so much written content do you ever run into any
    problems of plagorism or copyright violation? My blog has a lot of unique content I’ve either written myself or outsourced but it appears a lot of it is popping it up all over the
    web without my authorization. Do you know any ways to help reduce content from being stolen? I’d truly
    appreciate it.

  72. In accordance with my study, after a foreclosed home is bought at an auction, it is common with the borrower in order to still have the remaining balance on the mortgage. There are many lenders who try and have all service fees and liens paid by the following buyer. However, depending on selected programs, restrictions, and state legal guidelines there may be a few loans which aren’t easily settled through the exchange of lending products. Therefore, the duty still lies on the consumer that has got his or her property foreclosed on. Many thanks for sharing your thinking on this blog.

  73. Greetings! I know this is kinda off topic however , I’d figured I’d ask. Would you be interested in trading links or maybe guest authoring a blog article or vice-versa? My site covers a lot of the same topics as yours and I think we could greatly benefit from each other. If you’re interested feel free to shoot me an email. I look forward to hearing from you! Great blog by the way!

  74. It’s not my first time to visit this web site, i am visiting this website dailly and
    get good facts from here all the time.

  75. Does your blog have a contact page? I’m having a tough time locating
    it but, I’d like to shoot you an email. I’ve got some suggestions
    for your blog you might be interested in hearing.
    Either way, great blog and I look forward to seeing it grow over time.

  76. Hi would you mind sharing which blog platform you’re using?
    I’m planning to start my own blog in the near future but I’m having a difficult time selecting between BlogEngine/Wordpress/B2evolution and Drupal.
    The reason I ask is because your design and style seems different then most blogs and I’m looking for something
    completely unique. P.S My apologies for getting off-topic but I had to ask!

  77. I’m not sure exactly why but this web site is loading very slow for me.
    Is anyone else having this problem or is it a problem on my end?
    I’ll check back later and see if the problem still exists.

  78. Enola Schow says:

    Thanks for your article. What I want to comment on is that when evaluating a good on-line electronics retail outlet, look for a internet site with comprehensive information on critical indicators such as the security statement, basic safety details, payment methods, along with terms plus policies. Constantly take time to browse the help as well as FAQ segments to get a much better idea of what sort of shop operates, what they can do for you, and how you can make the most of the features.

  79. Thanks designed for sharing such a pleasant thinking, post is pleasant, thats why i have read it fully

  80. Magnificent items from you, man. I have keep in mind
    your stuff prior to and you’re just too excellent.
    I actually like what you’ve acquired here, certainly like what you are stating and the way in which through which you
    say it. You are making it entertaining and you continue to care for to stay
    it sensible. I can not wait to learn much more from you.
    That is actually a tremendous web site.

  81. Denna Lamond says:

    One other thing I would like to mention is that rather than trying to match all your online degree training on times that you end work (because most people are drained when they return home), try to get most of your sessions on the week-ends and only a couple of courses for weekdays, even if it means taking some time off your saturdays. This pays off because on the weekends, you will be much more rested along with concentrated on school work. Many thanks for the different ideas I have discovered from your web site.

  82. Major thanks for the article.Much thanks again. Will read on…

  83. Great info. Lucky me I recently found your website by accident (stumbleupon).
    I have book marked it for later!

  84. For the reason that the admin of this web site is working, no doubt very
    quickly it will be well-known, due to its feature contents.

  85. Thank you for the good writeup. It in reality was once a amusement
    account it. Glance advanced to more delivered agreeable from
    you! However, how could we be in contact?

  86. I’m not sure exactly why but this website is loading extremely slow for me.

    Is anyone else having this issue or is it a problem on my end?
    I’ll check back later and see if the problem still exists.

  87. I seriously love your site.. Excellent colors
    & theme. Did you create this site yourself? Please reply back as I’m hoping to
    create my own personal blog and would like to learn where you got this from or exactly what the theme is named.

    Appreciate it!

  88. This is very interesting, You’re an excessively skilled blogger.
    I have joined your feed and look forward to looking for extra
    of your excellent post. Also, I’ve shared your site
    in my social networks

  89. This article is in fact a pleasant one it helps new the
    web viewers, who are wishing for blogging.

  90. This paragraph is truly a fastidious one it assists new internet people, who are wishing in favor
    of blogging.

  91. Awesome issues here. I am very happy to peer your article.

    Thank you so much and I am having a look forward to contact you.
    Will you kindly drop me a e-mail?

  92. I like it when people get together and share ideas.
    Great blog, continue the good work!

  93. Hey there! This post couldn’t be written any better!
    Reading this post reminds me of my previous room mate! He always kept chatting about this.
    I will forward this post to him. Pretty sure he will have a good read.

    Thanks for sharing!

  94. Today, I went to the beachfront with my kids. I found a
    sea shell and gave it to my 4 year old daughter and said “You can hear the ocean if you put this to your ear.” She
    placed the shell to her ear and screamed. There was a hermit crab inside and it
    pinched her ear. She never wants to go back!
    LoL I know this is completely off topic but I had to tell someone!

  95. Thank you a bunch for sharing this with all of us you actually
    realize what you’re talking approximately! Bookmarked.
    Kindly additionally discuss with my site =). We can have a link change arrangement between us

  96. Remarkable! Its in fact amazing article, I have got much clear idea
    regarding from this piece of writing.

  97. Right away I am going away to do my breakfast,
    after having my breakfast coming again to read further news.

  98. Pretty section of content. I just stumbled upon your weblog
    and in accession capital to assert that I get in fact enjoyed account your
    blog posts. Any way I will be subscribing to your feeds and
    even I achievement you access consistently rapidly.

  99. You can definitely see your expertise within the article you write.
    The arena hopes for more passionate writers such as you who are
    not afraid to say how they believe. At all times
    go after your heart.

  100. It’s difficult to find educated people on this subject, however,
    you seem like you know what you’re talking about! Thanks

  101. This information is invaluable. When can I find out more?

  102. It’s really a nice and helpful piece of information. I am glad that
    you just shared this helpful info with us. Please keep us informed like this.
    Thanks for sharing.

  103. Wonderful goods from you, man. I’ve remember your stuff prior to and you’re just extremely fantastic.
    I actually like what you’ve got here, certainly like what you
    are saying and the best way during which you assert
    it. You make it entertaining and you still care for to stay it smart.
    I can not wait to read much more from you. That is really
    a tremendous website.

  104. I am genuinely thankful to the holder of
    this web page who has shared this impressive paragraph at here.

  105. Every weekend i used to visit this web site, as i wish for
    enjoyment, for the reason that this this web page conations in fact pleasant funny stuff too.

  106. Howdy! Quick question that’s entirely off topic. Do you know how to make your site mobile friendly?
    My site looks weird when viewing from my iphone4. I’m trying to find a
    template or plugin that might be able to correct this problem.
    If you have any recommendations, please share. Cheers!

  107. firobike.com says:

    Thanks for finally talking about >My Wife Had Ehlers Danlos Syndrome and She Never Knew
    – Global Genes <Liked it!

Leave a Reply

Your email address will not be published.

X