May 4,2021<\/p>\n
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.<\/a> Check it out! It’s about gastrointestinal issues in EDS.<\/p>\n March 16, 2019<\/p>\n The March support group PDF of the presentation is now available! Structural GI Issues in EDS 031219 CAEDSSG<\/a><\/p>\n January 9, 2019<\/p>\n The January support group slides are available: 010819 CAEDSSG<\/a><\/p>\n I also found great information on mast cell activation syndrome; please check out these additions:<\/p>\n Pharmacological treatment options for MCAS<\/a><\/p>\n anaphylaxis-emergency-action-plan<\/a><\/p>\n 10\/13\/18<\/p>\n The 10\/9\/18 support group presentation slides are here<\/a>. Please check out the meetings page for important news about the support group.<\/p>\n 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.<\/p>\n Recommended Providers<\/a><\/p>\n Also, I have revised my EDS poem, you may read An Apology to my Husband<\/a> via the link. I hope you enjoy it. No-one has offered me any literary prizes yet, but I remain hopeful.<\/p>\n 09\/21\/18<\/p>\n 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:<\/p>\n EDS web resources<\/a><\/p>\n Notes for the last meeting, 9\/11\/18, are now available on the meetings page.<\/p>\n 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.<\/p>\n Ode to my Husband<\/strong><\/span><\/p>\n I\u2019m so sorry, my darling,<\/p>\n I have problems galore.<\/p>\n I\u2019m always just<\/em> exhausted,<\/p>\n And every<\/em>thing is sore.<\/p>\n And even though I\u2019m tired,<\/p>\n My sleep I cannot find<\/p>\n Unless I use the velvet hammer<\/p>\n That renders me half blind.<\/p>\n And when the sleep does come,<\/p>\n My snores bounce off the walls,<\/p>\n Until you must seek your refuge<\/p>\n In the bedroom down the hall.<\/p>\n And when the morning comes<\/p>\n (But not before nine or ten),<\/p>\n The whole frustrating process<\/p>\n Just starts up once again.<\/p>\n I try to find some respite,<\/p>\n I try with all my might<\/p>\n To seek out some relief,<\/p>\n Or end this endless blight.<\/p>\n But, my love, it may not come,<\/p>\n For my body is a home<\/p>\n To that pernicious malady-<\/p>\n The Ehlers-Danlos Syndrome.<\/p>\n \u00a92018 Gayle Yankee<\/p>\n 09\/08\/18<\/p>\n 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.<\/p>\n 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<\/em>), 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!<\/p>\n July 12, 2018 meeting slides PDF<\/a><\/p>\n August 9, 2018 meeting slides PDF<\/a><\/p>\n 06\/15\/18<\/p>\n 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:<\/p>\n My Ehlers-Danlos Syndrome 061418 revised<\/a><\/p>\n The original presentation is:<\/p>\n My Ehlers-Danlos Syndrome 061418<\/a><\/p>\n 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!<\/p>\n I have a list of web resources:<\/p>\n \u0097The Ehlers-Danlos Society (formerly ednf.org) https:\/\/www.ehlers-danlos.com\/<\/a><\/p>\n \u0097EDS Awareness https:\/\/www.chronicpainpartners.com\/<\/a><\/p>\n \u0097Ehlers Danlos International Registry http:\/\/www.edsregistry.org\/<\/a><\/p>\n \u0097Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc. http:\/\/www.ehlersdanlosnetwork.org\/<\/a><\/p>\n And also online support:<\/p>\n \u0097Inspire https:\/\/www.inspire.com\/<\/a><\/p>\n \u0097EDS Today~Advocates https:\/\/themighty.com\/partner\/edstoday\/<\/a><\/p>\n \u0097Rare Connect https:\/\/www.rareconnect.org\/en\/community\/ehlers-danlos-syndrome<\/a><\/p>\n \u0097Strength\/flexibility\/health\/EDS\u00a0 http:\/\/strengthflexibilityhealtheds.com\/<\/a><\/p>\n Check them out – very helpful information is available!<\/p>\n Drop me a line; I look forward to hearing from you.<\/p>\n\n <\/p> <\/ul><\/div>\n