About: EDS & HSD Community Honolulu, HI
Aloha fellow Zebras & Supporters!
Our EDS Support Group was originally formed in 2019. We plan to have meetings and social get-togethers. We understand that EDSers have our good days and our bad days. Even if you cannot attend the meetings regularly, we can still communicate through our web pages.
This is a Non-Formal & ALL INCLUSIVE open support group for people with Connective Tissue Disorders such as: Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD or the older classification: Joint Hypermobility Syndrome), and any of the co-morbidities that are usually associated with these disorders. Spouses, partners, members of your ohana, friends, & caregivers are also welcome to join our group.
No matter where you are in your journey (diagnosed or not), we welcome you with open arms and of course, ((gentle hugs)). No matter if you were born and raised here in Hawaii or have moved here from afar. You are not alone. Although we are limited in our resources and can at times feel like our voices are not heard, please know that you will be heard. Your feelings are valid and most importantly so are you.
This group will be a place for members to gain emotional and informational support, exchange resources, and to help spread awareness. There will never be any judgment or pressure to participate. While we encourage discussion, you are also free to just sit quietly. Attendees will be asked to act within respectful guidelines to ensure the comfort and safety of others.
Meetings will usually consist of sharing time (members will have a chance to share information, resources, items that may be of help to others, etc…), pre-planned topics that will be open for discussion, and announcements ie. special events or speakers.
For those who do not understand the term “Zebra” here is an excerpt from the Ehlers-Danlos Society’s website:
“People with the Ehlers-Danlos syndromes and hypermobile spectrum disorders (HSD) often identify themselves as zebras.
Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
But many of us spend years pursuing a diagnosis for disorders that aren’t well known. Or aren’t expected in someone who looks normal, or is too young to have so many problems, or too old. Or even, what we might have is considered too rare for anybody to be diagnosed with it.
So the zebra became our symbol to mean, “Sometimes when you hear hoofbeats, it really is a zebra.” Ehlers-Danlos syndromes are unexpected because they’re rare. Hypermobile spectrum disorders are common, but are unexpected because they remain misdiagnosed or under-diagnosed.
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical.
We have different symptoms, different types, different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD. “
DISCLAIMER: We will never give advice, counsel, diagnose, or prescribe anything. Our group can only give suggestions & recommendations through our own personal experiences. Only YOU can decide if you would like to utilize them. It is recommended and imperative that you seek an opinion and/or consultation from a medical professional for any and all advice concerning any information you receive from anyone or anything affiliated with our support group.
Mahalo for your visit and we hope that you will consider joining us!
