THE CAMPAIGN TOWARDS HEALTHCARE
FOR EHLERS DANLOS SYNDROMES
& HYPERMOBILITY SPECTRUM DISORDERS IN IRELAND
ABOUT ME
Hi! My name is Kitty. I live in Ireland. I'm a human rights and disability rights advocate, community worker, professional shouter...( amongst other things!)
I have hEDS - Hypermobility Ehlers-Danlos Syndrome (as well as many of the co-morbid issues: Chiari Malformation, cervical instability, osteoarthritis, Dysautonomia, and so on) - And like many of you reading this, I wasn't properly diagnosed until adulthood. This is unfortunately very common, especially in Ireland.
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I use various mobility aids, depending on the day and level of activity: rollator, trough crutches, walking stick - and increasingly my wheelchair.
I set up this campaign in 2017 (along with a petition to fight for appropriate healthcare), to help spread awareness of EDS and HSD amongst the general public as well as medical professionals. I also have a personal blog on Facebook.
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If you or a loved one has EDS/ HSD, or you suspect you do, we would love for you to join us at a gathering or take part in any online advocacy, or even hold an awareness day. To get directly involved, join our WhatsApp chat too!
JOIN THE MOVEMENT!
BECOME A
MEMBER
If you would like to be directly involved in the campaign, then join our working group on WhatsApp. Here we: discuss and plan public and online events, have your say and express ideas for the campaign and spreading awareness in general.
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Remember, if you do not want to be directly involved you can still follow our public social media pages to keep up-to-date. On top of this, you can join our mailing list also.
HOLD AN
AWARENESS DAY
All you need is a table, some leaflets and if you like, a printed copy of our petition to collect signatures (which can later be inputted online). In the past members have done this at college, work place and even just simply on public main streets in their towns.
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This is a great way to spread awareness of Ehlers Danlos Syndromes/ Hypermobility Spectrum Disorders, as well as the issues we face obtaining diagnosis and healthcare/ the campaign in general.
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The more people we can educate, the better - Reaching members of our communities who live with these conditions but are unaware, is so important.
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Message us details of when you are planning your event and where and I'll post you out some leaflets, as well as promote it on the social media channels.
SIGN THE
PETITION
Sign the petition asking the Irish government to implement changes to help us obtain public diagnosis, and appropriate basic healthcare for EDS/ HSD patients in Ireland!
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- Click here.
SPREAD
THE WORD
After signing our petition, share it with friends and family to sign too.
Also check us out on social media and invite friends to do the same
- The easiest way to show your support is to follow, like and share.
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If your social media accounts are public use the tags #EDS4IRE and #HSD4IRE, and we will re-post or share. Feel free to tag us either.
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If you are on Facebook, make sure to click on "invite friends" and invite people on your friends list to follow us also.
You can find all our socials to follow here.
BECOME A SUPPORTER
If you:
Have a blog about EDS/ HSD or related issues, run a support group, charity or disability rights organisation, involved in a political party, own a business associated with EDS/ HSD/ hypermobility - then we would love your support.
This simply involves building an alliance with our community and our demands, and we will showcase you on our website bellow as well as on our socials. In return we would appreciate the odd share of our posts or the petition on your socials also.
This is not monetary support, rather online networking towards common goals.
If this sounds like you or your group/ org, send us a message.
Get the Latest News & Updates
I THINK I HAVE EDS/ HSD
If you suspect you or your child has any form of Ehlers Danlos Syndrome or Hypermobility Spectrum Disorders, it can be very overwhelming and hard to know where to get help and support. This section is for you.
Often GP's are not aware of these conditions, or don't know where to turn to for their patients. If you need leaflets for your GP, feel free to send us a message.
First thing is first - Diagnosis is usually obtained through a rheumatologist, or a geneticist. Going private is the easiest and quickest option, unfortunately. Aside from diagnosis, physiotherapy is very important in maintaining mobility. Make sure to inquire if your physio is "hypermobility aware", as an unqualified one may lead to further injury risk.
In the past #EDS4IRE/ #HSD4IRE campaign used to suggest some doctors based on the general public's experiences. However throughout the years we have found that many consultants were not reliable, or consistent, or up-to-date with terminology. For this reason we now only suggest one, who we know has worked with the community and is highly trained in this field.
Support from the community is also important. See below for helpful links, and how to get started on your diagnosis journey.
Dr. Brian Mulcahy has years of experience in EDS/ HSD assessments, and works privately in Cork. Many of us have been diagnosed with Brian, and he has been a consistent help to the community in Ireland. He sees patients from age 12 upwards. Assessment involves physical checks and clinical findings, in-depth medical history and family history. If he believes you require genetic testing or testing for comorbid issues, he will discuss this with you also.
Currently his wait list for assessments is around 10-12 months, and cost is roughly €500. GP referral is required.
EDS Awareness Ireland Support Group is a Facebook support group based in Ireland. If you are diagnosed or believe you or child has EDS/ HSD, chatting with the community can help. Make sure to answer the join questions. If you want to support but don't have EDS/ HSD, follow their public Facebook page instead of joining the group.
For all things Ehlers Danlos syndrome, including learning about the various types, symptoms, and information on current research - Check out The Ehlers Danlos Society, based in the US. Make sure to follow their socials also, for awareness and education.
Likewise, Irish Dysautonomia Awareness Support Group is a Facebook support group based in Ireland for people with a comorbid condition called Dysautonomia. Not everyone with EDS/ HSD will have this condition, but if you suffer with low BP or tachycardia, it's worth looking in to. If you want to support but don't have this condition, follow their public Facebook page instead of joining the group.
OUR SUPPORTERS
