#EDS4IRE #HSD4IRE

Have you signed our petition yet? We want real health care, here in Ireland, for those with Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder - NO MORE TRAVELLING TO OTHER COUNTRIES. Please sign and RT. #EDS4IRE @DonnellyStephen @MichealMartinTD my.uplift.ie/petitions/appo…

WE NO LONGER USE THIS PLATFORM - FIND US ON IG, FB and TikTok #EDS4IRE #HSD4IRE eds4ire.ie

Popular People With Ehlers-Danlos Syndrome - the list steadily grows... buff.ly/3N5EQz8 #EDS #hEDS #Hypermobility #HSD #Fibro #MS #Spoonies #NEISvoid #Celebrities #ChronicIllness

Not all stripes are black and white 🌈🦓 The Ehlers-Danlos Society recognizes and celebrates Pride Month this June with the LGBTQIA+ members of our dazzle! 🏳️‍🌈 Our Let’s Chat: LGBTQIA+ group is for LGBTQIA+ community members who have been diagnosed with, or suspect they may have, EDS or HSD. The group chats on Zoom and the next meet-up is June 12 at 12:00 pm EST/5:00 pm BST – Register for the series here: ehlers-danlos.com/virtual-suppor… #Pride #PrideMonth #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

“I was diagnosed with Ehlers-Danlos syndrome (EDS) after my ophthalmologist noted some specific issues with my eyes and insisted that they be investigated. Despite being diagnosed at a major research university hospital with supporting cardiac, ophthalmologic, dermatologic and orthopedic evidence, I have found that some medical professionals are openly hostile when they spot my EDS diagnosis in my chart. These negative preconceived notions about EDS, and EDS patients, make it incredibly difficult to receive needed care at times. This is one of the reasons I feel strongly that awareness is so important: it helps our medical professionals understand that the various types of EDS are real conditions that need to be treated with respect and compassion. I am so grateful to the city of Santa Monica and mayor Phil Brock for issuing this proclamation. Hopefully it will be one small step of many toward increased awareness, knowledge and care for EDS patients and their loved ones.” Thank you to Denise for participating in the Proclamation Challenge and making it officially EDS and HSD Awareness Month in the city of Santa Monica, USA. #MyEDSChallenge #MyHSDChallenge #TogetherWeDazzle #EhlersDanlosSyndrome #SantaMonica

If you missed our "life changing" Minding Autistic Minds Conference then now it's your time to see what all the fuss was about! An amazing, powerful, Autistic rights-led conference Available here #recordedwebinars" target="_blank" rel="nofollow noopener">ausometraining.com/anytime-autism…

Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system. Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia with different symptoms. People with EDS and HSD most commonly have a form of orthostatic intolerance. “Orthostasis” means to stand upright, so orthostatic intolerance refers to symptoms that occur due to standing up or being upright. The two most common types of orthostatic intolerance are: 1️⃣ Orthostatic hypotension (OH) — low blood pressure on being upright. ⁠ 2️⃣ Postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate when standing without a drop in blood pressure. Symptoms of dysautonomia include: ⁠ ● Tachycardia (fast heart rate)⁠ ⁠● Palpitations (feeling the heart racing or pounding) ● Hypotension (low blood pressure) ● Lightheadedness ● Presyncope (a sense of being about to faint) ● Syncope (fainting) ● ⁠Blurred vision ⁠😶‍🌫️Brain fog (problems with concentration and memory) ● Headaches ⁠● Chest pain ⁠ ⁠● Shakiness⁠ ⁠💤Chronic fatigue ⁠● Exercise intolerance and feeling worse after exercise⁠ ● Swelling and/or discoloration of the legs after standing for short periods of time ● Cold, discolored hands and feet⁠ ⁠● Temperature dysregulation⁠ 🥵 Sweating ● Sleep disturbance⁠ ● Gastrointestinal issues ● Nausea 🚽Bladder dysfunction Learn more about diagnosis and management here: ehlers-danlos.com/dysautonomia/ #Dysautonomia #EhlersDanlosSyndrome #Hypermobility #HypermobilitySpectrumDisorder #POTS #meded #medtwitter

Daily #RT #Share & #Support Let's unite in solidarity & fight systemic discrimination! Help me get the chance to my right to education @UCC gofund.me/bef970d6 Stay updated as @DADACampaign @TomClonan fight for #HumanRights & #unionofequality #EducationForAll #Disability

May is #EhlersDanlosAwarenessMonth. I’m 39, still fighting to obtain a public rheum here in Ireland so that I don’t have to travel privately to UK. My story is unfortunately not unique. Whole families are being left to rot. If you are press, please reach out to eds4ire@gmail.com

I know many of us with Ehlers Danlos either have ME or have had post infection ME in the past. Either way we know what it is like to also not have any consultant here in Ireland. Please sign.

“We don’t want to express the physical #pain all the time and when you live in constant pain, there is little point in doing so. Exhibiting your high pain levels only serves to make others uncomfortable”: buff.ly/2tIVGuT by @apainprincess #ChronicPain #InvisibleIllness

The Rise of Clinician-Associated Trauma in the Doctor-Patient Relationship - the fourth part of our medical trauma series buff.ly/44DW8ed #EDS #hEDS #Hypermobility #HSD #CPP #Pain #MedEd #Doctors #Nurses #NEISvoid #Spoonies #Zebras #patients #EhlersDanlosSyndrome

It's Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month! [Thread] What is #EDS? The Ehlers-Danlos syndromes (EDS) are a group of 13 individual genetic conditions, all of which affect the body’s connective tissue: ehlers-danlos.org/what-is-eds/

#REDS4VEDS is just four days away. Don't forget to send us a pic of you in red either in the replies or to brandcomms@marfan.org, and we'll share it from the Foundation as a show of global support for our friends at @ajschallenge. #VEDS

ICYMI #LongCovid AND #hypermobility ? Really ? Find out more May 19th Sunday from 3.30 pm BST #dizziness #fatigue #pain sedsconnective.org theguardian.com/society/2024/m…

✊Proud to Progress my Disability (Rights) Misc Provisions Bill. This Bill Creates Legal Rights for #Disabled Citizens to Therapies, Interventions & Independent Supports within an Assessment of Need - Within the Therapeutic Window. We Must Not Flinch from Fundamental Human Rights

Great awareness for #EhlersDanlosSyndrome and #Hypermobility in @guardian today, including why our GP toolkit and the school toolkit are so needed, and why we need to keep momentum with our #EnoughIsEnough campaign for a pathway for care in the UK. theguardian.com/society/articl…

It's Official: The Disability Pride and Power Festival & Parade will return this year with our second parade on Saturday 20th July, 2pm in Dublin City Centre. More Details to Follow. Join the movement to celebrate disabled culture and identity, pride & power! #LastOneOnTheTrain

Daily #RT #Share & #Support Let's unite in solidarity & fight systemic discrimination! Help me get the chance to my right to education @UCC gofund.me/bef970d6 Stay updated as @DADACampaign @TomClonan fight for #HumanRights & #unionofequality #EducationForAll #Disability

Fragile skin is a feature of #ClassicalEhlersDanlosSyndrome, often splitting easily with minimal trauma. This leads to significant scarring usually starting from childhood. The common sites for scars are on the knees, elbows, shins, forehead and chin.