#edssupport

[ehlersdanlos-ccmc]

Looking for support groups?

The Ehlers Danlos Society has a multitude of support group options.

Local Connecticut communities

Connecticut Zebras

Western CT EDS

Let’s Chat: Virtual Support Group

Let’s Chat: Parents

Let’s Chat: Partners and Spouses

Let’s Chat: Teens (ages 13-17)

Let’s Chat: Men with EDS and HSD

Let’s Chat: EDS and LGBTQIA+

Online Communities/Forums

The Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Support Community

Rare Connect

The Mighty

[sometimeslifesucksdotorg]

please help!

I have EDS and a new symptom has emerged (yay). I can’t swallow ANYTHING, no food, no water and no tablets (I’m literally choking on my own spit). Anyone know what’s going on? Please message me!!!!

[mindtherapykent]

Japan is Amazing place for many reasons. His some things that made us laugh and say “can only happen in Japan” lol!😂 They give you clean daily pyjama during your hotel stay. Dean looked like Mr Scrooge 😂. Space is tight in Tokyo so buildings are on top of each other and rooms are small, so are bathrooms and baths lol.😂 The Japanese are so so kind we went to a Kentucky, with usual only a order service on ground floor. All seating upstairs or underground. Asked if we were eating in as I was in wheelchair we said yes. Dean asked to put wheelchair in corner. Next minute after ordering our food we were told to wait. Staff went upstairs saying getting a table. So we thought that’s nice she is checking to see if a table is free. She then went downstairs with another member of staff and to our amazement come up the stairs with a table and two chairs for us to put in the ground floor service lobby area lol!!! No one else but us sitting eating it was hilarious we were shocked. “ only in Tokyo” 😁. Walking through one of the large cities we see a live pig in a jacket licking people’s feet. Lol😂🤣 “ only in Japan”. 😂 We went under cover to get an umbrella out our bag in a car park entrance. A security man came out which we thought was to tell us off but he mumbled something went in his hut and came back handing us two brand new see-through umbrellas for nothing, how kind is that. “Only in Japan”😍. We see a man leave the restaurant on his suitcase. 😂🤣” only in Japan” The fire brigade needed to get past us in this narrow street while we were drinking at a bar. We moved and they bowed as three walked past along side the vehicle. Then once in the next road the driver got out walked up to us and gave us a bigger bow several times as he walked backwards. I felt like the queen lol!!! It’s hilarious 😂🤣😂🤣 When we left and our plane was taxing the work men who loaded on our cases stood in a line and waved to us and took a bow. Yep you got it ”only in Japan” 😁😍😘 #onlyinjapan🎌 #triptotokyo2019 #suchfunday #suchagreattherapy #greattherapy #therapyforme #edssupport #mindtherapy💕 #keeppositivemind #disabilityconfident #hypnotherapyworks #themindset (at Maidstone, Kent) https://www.instagram.com/p/BzaKCbAF8F3/?igshid=q9oekralydwb

[gingersnapsgirls16]

I wear #stripes for someone I l🖤ve #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness t-shirt. #eds #zebra #zebraprint #support #supportribbon on the front of the t-shirt and the stripes design on the back. Tees can be #personalized for you. Help support someone you love and bring #awareness #awarenessforehlersdanlos with these #edssupport tees. My daughters and I are all #edswarrior s so awareness is very important and personal for us. Along with the #goredforwomen #gored campaign as I'm also a #heartdisease #heartdiseasesurvivor #heartdiseasewarrior and we are #fightingforacure #fightingforawareness so my girls don't develop #cardiacdisease ❤️

[ehlersdanlos-ccmc]

To celebrate Ehlers Danlos Awareness Month in May, CCMC is celebrating by starting our very own Ehlers Danlos Patients and Families Support Group with monthly meetings!

Meetings will be held both virtually and in person! Virtual meetings will be held via Zoom on the third Wednesday of every month from 6-7 pm. In person meetings will be held on the third Thursday of every month from 6-7 pm.

Register here!

Questions?

Disclaimer: This is fictitious post for a class assignment.)

[ehlersdanlos-ccmc]

CCMC #MyEDSChallenge Fundraiser

Spring has sprung and May is just around the corner, which means it’s time to share our support for people living with Ehler’s Danlos Syndrome!

Please join us at CCMC as we raise money for EDS research and patient care this May 2022. Visit our JustGiving fundraising page to donate to The Ehlers-Danlos Society May Awareness Month 2022.

We will also be holding events throughout the month of May to raise money and awareness:

May 4, 2022: Dress Like a Zebra Day

Join hospital staff, patients, and providers in rocking zebra striped clothing during your visit. Don’t own anything with a zebra print? Visit the gift shop (in person or online) to purchase zebra shirts, pajama pants, scrubs, socks and more! All proceeds will go to the JustGiving fundraiser!

May 17, 2022: CCMC Walk n’ Roll Challenge

Join us at Wikham Park in Manchester, CT as we walk to raise money for EDS Awareness! Sign up here and don’t forget your pedometers. Every kilometer = 1 Act of Awareness!

May 31, 2022:  Zebra Warriors Dinner and Raffle

Join us at the Connecticut Convention Center in Hartford, CT for dinner, music, and an art raffle. All art is donated by Zebra Warriors from around the state! Buy your dinner and raffle tickets here. Proceeds will go to the JustGiving fundraiser!

Don’t forget to share the fundraiser and your involvement on social media using the #MyEDSChallenge and #CCMCEDS tags!

Questions?

(Disclaimer: This is a fictitious fundraiser as part of a class project.)