Sunday, May 31, 2009

Ehlers-Danlos and the Librarian in Black

The Librarian in Black is a fantastic library blogger named Sarah Houghton-Jan.  She is on my "Recommended Bloggers" list for that very reason.  She has become the victim of a serious genetic defect and now wishes to spread the word about Ehlers-Danlos Syndrome, also called EDS.

She tells us not to be sad, but this is one of the saddest librarian blog posts I have ever read: "Hello. My Name is Sarah, and I Have Ehlers-Danlos Syndrome," by Sarah Houghton-Jan,, 29 May 2009.

I don't know what to say to Sarah under these circumstances.  I can only hope that my helping her spread her message about EDS will at least give her another smile.

Sarah concludes her blog post with these words:

So, to conclude ... please do not be sad.  Be educated.  That is what this post was all about, after all.  So, what can you do to make my confession worth it?
  • Remember what EDS is, what its symptoms are, and maybe you can help someone else who doesn't know what's wrong with them get an early diagnosis and treatment.
  • Be patient with me as I have my bad days, weeks, or months.   I am not ignoring you, I just can't muster the energy or get through the pain to do what I have to do sometimes.
  • Donate to the Ehlers-Danlos National Foundation.
  • Buy flowers through EDNF’s site and a portion of the sale will go directly to EDNF.
  • And finally, if you want to learn more, watch this longer video about a woman with EDS, the effect on her life, and her process to diagnosis.

Thank you all for your support, especially those who have known of my disorder and support me through patience, kindness, and making sure I get enough rest at conferences (thanks Aaron!).


Good news!!  "Do You Know What Ehlers-Danlos Syndrome Is?," by Sarah Houghton-Jan,, 13 May 2011.


More good news!!  "May is Ehlers-Danlos Syndrome Awareness Month," by Sarah, 14 May 2012.


An update:


  1. Thank you for your post. I also have EDS and thought the description apt. I am sad that author has not felt able to share with colleagues previously EDS is indeed under the umbrella of hidden disability.

  2. Thank you, Anonymous. Good luck to you.


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