Comments on: May is Ehlers-Danlos Syndrome Awareness Month

By: Mary

Mary — Tue, 14 May 2013 20:50:29 +0000

Sarah,I think it’s great that you’ve been able to reduce your problems with diet chance. However I do believe it is strictly a case by case thing and not everyone is going to be healed. My daughter has POTS,EDS,AV Fistula and possible chiari so she’s got alot going on. She’s in severe pain most of the time. We both have POTS and EDS and what works for me doesn’t always work for hre and vice versa. Especiaily where pain is concerned. She dislocates ALL the time and some of us hardly ever. So we can’t bunch ourselevs into the same one size fits all category of what’s going to work…unfortunately. I wish it were that simple.

I’m really happy for you and I hope you have continued success with what you are doing.

By: Tori

Tori — Fri, 29 Mar 2013 22:33:31 +0000

Thank you so much. I was just diagnosed with EDS. You give me hope. This has been a mystery for many many years. Since I was born. With all the surgeries fixing joints now everything is getting fixed.

By: Sarah

Sarah — Tue, 07 Aug 2012 19:14:25 +0000

Wow, Eric. Thanks! I’m so glad to hear that I somehow made you feel better about presenting. There’s absolutely nothing wrong with not fitting the librarian stereotype. In fact, I think that’s half the reason people like me I have also now subscribed to your blog, which has an AWESOME name btw.

By: Eric

Eric — Tue, 07 Aug 2012 19:09:30 +0000

Yay for reducing your symptoms with a vegan diet!

I saw you speak at last year’s Internet Librarian and I wish I had taken the time to come up and say hello. I enjoyed your presentation, and especially your attitude. I liked your cards and swag as well. I was happy to see another “librarian in black’ as there aren’t enough of us

I gave my first ever seminar at that conference, and needless to say, I was a bit nervous. Mainly because I felt like I didn’t fit in too well, and I definitely don’t fit the appearance of the stereotypical librarian (if there is such a thing these days). Seeing your presentation calmed my nerves quite a bit, and boosted my confidence to see someone else who doesn’t quite fit the mold up on stage.

Best wishes to you as library director as well, it sounds like a great but challenging position.

By: Medical Reports: Straighten Up - The Site About Scoliosis Treatment - Scoliosis Treatment

Wed, 04 Jul 2012 01:03:41 +0000

[...] Michael Jofe, Joe DiMaggio Children's Hospital: "Here …See all stories on this topic » If you like to read an interesting articles, these are what I’ve found for you: Thank you for the…uys, It looks like I need scoliosis surgery, and I am scared. Have any of you had it? How did you [...]

By: Sarah Houghton (Librarian in Black)

Sarah Houghton (Librarian in Black) — Mon, 18 Jun 2012 23:31:18 +0000

Jo: I wish you and your daughter luck. I recommend starting with this resource list built by the amazing librarian Rick Roche: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources: http://ricklibrarian.blogspot.com/2009/06/ehlers-danlos-syndrome-reference.html

By: J0 Johnson

J0 Johnson — Mon, 18 Jun 2012 23:28:43 +0000

My daughter has EDS. The first dislocations (that we are aware of) happened when she was three years old. She was diagnosed in 2005 at age 28 when she was unable to keep her arms in the shoulder joints. She is one of the unluckly ones. She had to stop working in 2005 and has not been able to drive for the last five years. She had knee surgery when she was 16, but no one realized the whole picture. She has dislocations in both large and small joints including ribs. As this is a connective tissue disorder, she has dealt with heart problems including racing heart beats and extremely low blood pressure. Would like to find resources for her. We have been unable to find a specialist, though she has been seen at University of Texas Southwestern Medical Center in Dallas..

By: todd

todd — Tue, 12 Jun 2012 06:12:39 +0000

Hi Sarah. Another EDSer living in the Bay. Appreciate your awareness. Keep spreading the word.

Congrats on getting off chronic use of pain meds. I noticed someone posted about Curcumin/Tumeric. I too am a big fan.

Take it easy and I wish you good health.

By: Ckubala

Ckubala — Wed, 16 May 2012 23:10:31 +0000

Thank you for sharing your experiences Sarah! It is a testimate to your passion to your profession that you can accomplish so much in spite of personal maladies. I had never heard of Ehlers-Danlos Syndrome so the this blog post is informative and educational.

Are you going to share a picture kicking up those heels?

By: Dan Kleinman of SafeLibraries

Dan Kleinman of SafeLibraries — Tue, 15 May 2012 06:56:44 +0000

LiB: This is welcome news. I do think about you from time to time. You are so brave generally, but also for writing about your disease here so as to help others. Continued well wished for you from me.