Capital Area Ehlers-Danlos Syndrome Support Group Articles
May 4,2021
I hadn’t been doing formal presentations at the support groups for a while, but recently resumed. I’ve recorded the presentations on Zoom, but this site won’t allow upload of files over one MB. The most recent, 4/13/21, is available on the Facebook page here. Check it out! It’s about gastrointestinal issues in EDS.
March 16, 2019
The March support group PDF of the presentation is now available! Structural GI Issues in EDS 031219 CAEDSSG
January 9, 2019
The January support group slides are available: 010819 CAEDSSG
I also found great information on mast cell activation syndrome; please check out these additions:
Pharmacological treatment options for MCAS
anaphylaxis-emergency-action-plan
10/13/18
The 10/9/18 support group presentation slides are here. Please check out the meetings page for important news about the support group.
In September, I collected some information about providers recommended by support group members. I do not support/not support the providers on the list; I simply make them available here for you based on the input of the support group members who listed them. I will be adding to the list with new input from members.
Also, I have revised my EDS poem, you may read An Apology to my Husband via the link. I hope you enjoy it. No-one has offered me any literary prizes yet, but I remain hopeful.
09/21/18
I have created a PDF for useful online resources for EDS, since they are at the very bottom of this page. Please click on the link:
Notes for the last meeting, 9/11/18, are now available on the meetings page.
For those of you who missed the August support group meeting -you missed the first-ever live reading of my recent poem (written two days before the meeting). I will post it here for your reading enjoyment. Please read it out loud for best effect.
Ode to my Husband
I’m so sorry, my darling,
I have problems galore.
I’m always just exhausted,
And everything is sore.
And even though I’m tired,
My sleep I cannot find
Unless I use the velvet hammer
That renders me half blind.
And when the sleep does come,
My snores bounce off the walls,
Until you must seek your refuge
In the bedroom down the hall.
And when the morning comes
(But not before nine or ten),
The whole frustrating process
Just starts up once again.
I try to find some respite,
I try with all my might
To seek out some relief,
Or end this endless blight.
But, my love, it may not come,
For my body is a home
To that pernicious malady-
The Ehlers-Danlos Syndrome.
©2018 Gayle Yankee
09/08/18
We now have had three support group meetings, and the next is Tuesday, 9/11/18. Links for PDFs for the last two meetings’ PowerPoint slides are available below.
At the next meeting, Dr. Carla Guggenheim will present information on the Pentad, a group of five inter-related conditions: hypermobile EDS (hEDS), postural orthostatic tachycardia syndrome (POTS), dysautonomia (fight-or-flight system always switched on), Mast Cell Activation Syndrome (MCAS), and Small Intestinal Bacterial Overgrowth (SIBO). A quick core and posture exercise review will also be provided. It will be a very interesting and useful meeting, so hope to see you there!
July 12, 2018 meeting slides PDF
August 9, 2018 meeting slides PDF
06/15/18
We had the first meeting of our support group yesterday evening. It was excellent to meet new people and share our experiences with EDS. I (Gayle) did a PowerPoint presentation on EDS. With input from group members, including Dr. Carla Guggenheim, a rheumatologist who attended the group, I revised my presentation:
My Ehlers-Danlos Syndrome 061418 revised
The original presentation is:
My Ehlers-Danlos Syndrome 061418
You can check out the changes if you wish! I will be adding narration in the future, but the slides are pretty straight-forward. I hope the information presented is helpful!
I have a list of web resources:
The Ehlers-Danlos Society (formerly ednf.org) https://www.ehlers-danlos.com/
EDS Awareness https://www.chronicpainpartners.com/
Ehlers Danlos International Registry http://www.edsregistry.org/
Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc. http://www.ehlersdanlosnetwork.org/
And also online support:
Inspire https://www.inspire.com/
EDS Today~Advocates https://themighty.com/partner/edstoday/
Rare Connect https://www.rareconnect.org/en/community/ehlers-danlos-syndrome
Strength/flexibility/health/EDS http://strengthflexibilityhealtheds.com/
Check them out – very helpful information is available!
Drop me a line; I look forward to hearing from you.
