Add your link to our blogroll!

Hi folks,

I am currently updating the Links on this here blog, would you like to add your Page, Blog, Insta, Twiter, Channel, Whatever? If it is Chronic Illness or Medically related I would love to add your link and share to the readers, followers and lurkers and gain more exposure.

It’s not the biggest blog in the world but being part of this community is nice, lets help each other out and share so that we can better be seen! 🙂

Comment below or email me at irishpotsies@gmail.com, alternatively you can also find us at Facebook, Twitter and even Youtube (thought that hasn’t been updated in aaaages!)

I would also appreciate a link back to https://irishdysautonomia.wordpress.com but it’s not absolutely necessary! 🙂 🙂

Thanks for reading folks, hope you are all well 🙂

A to Z of Ehlers Danlos Syndrome: A is for Autism

The A to Z of Ehlers Danlos Syndrome!
A great idea to highlight and spread awareness of EDS during May, EDS Awareness Month.

Sharing from the wonderful ‘Autistic Zebra‘ 🙂

Please be sure and click through to any other sites I may reblog, throw them some friendly support 😊💜

autisticzebra

May is Ehlers Danlos Syndrome Awareness Month. For this month, I’m goingto write an A-Z, discussing a different topic linked to EDS each day. I’m going to write about topics that effect me personally, having the Hypermobility type of EDS, so won’t be covering topics more common to the other types, such as Vascular or Classical EDS, though there may be topics which overlap these types. So, to kick things off, I present:

A is for AUTISM:

Autism is a neurological difference that is linked to EDS. Research on the links is ongoing, with not much published on it yet. Anecdotally, however, the link does seem to be there. A lot of parents with EDS have autistic children. Lots of autistic people I know have also been diagnosed with EDS or Hypermobility Syndrome. And lots more are beginning to assess their various symptoms and are starting towards the route to…

View original post 122 more words

EDS Awareness Month – 2016

448381a8939fc4c75eb9e7263ad9107e

Courtesy of Google Images

 

It’s Sunday the 1st of May 2016 and so kicks off Ehlers Danlos Syndrome (EDS) Awareness Month.

This year is pretty special in that there is a, now Sold Out, International EDS Symposium in New York, 3 – 6th May, where a host of working groups of some of the world’s leading Specialist Consultants, Doctors and many others, get together and will reclassify the diagnostic criteria for all Ehlers Danlos types.

I will let the amazing organisers, The Ehlers Danlos Society, tell you all about it, be sure to check out their website right ‘Here

” The Ehlers-Danlos Society is proud to announce an international symposium on Ehlers-Danlos syndrome in New York City, May 3–6, 2016, generously funded by EDS UK and the Ehlers-Danlos National Foundation. The symposium is being held in alliance with the EDS consortium in Ghent and medical professionals internationally.

The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.

We are excited to be working on a project that will change the lives of those with EDS. Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally our community will have the foundations we need to ensure more research, funding and recognition.

Very generous private donations have allowed us to get the symposium underway. We are extremely grateful for the support, but more needs to be raised to make this most important event a complete success. Help us “Make our Invisible Visible” by donating to this project; anything you can give will be very much appreciated. To donate, please visit EDS UK or EDNF. “

This is very exciting stuff but I’d say it will take a long time for any of it to filter into the Irish Health System, but we have a few excellent EDS/HMS, Connective Tissue and Collagen disorder related groups here in Ireland who work tirelessly to spread more awareness and the most up to date information and research. Here are the ones I am most aware of, if there are any I have missed and I’m sure there are, please, really please let me know of any more Irish related Connective Tissue groups.

Please click on the names below to be taken to these pages. Also be aware that most of these links also have Facebook and Twitter pages as well as private, closed support groups for patients and relatives be sure to ask at the links below if you are interested in joining.

IMG_20160501_214031

EDSAwarenessIreland 2016 EDS Awareness Month Logo 

EDS Awareness Ireland

Irish EDS & HMS

Marfan Support Group Ireland

Marfan Research Foundation Ireland

Irish EDS&HMS have a lovely page on their site giving an example of different connective tissue disorders that incorporate Hypermobility, as there are a few others besides EDS itself. Is certainly worth the quick read through. Find it , ‘Here

Only 2 weeks ago or less, Irish EDS&HMS also got the amazing opportunity to have a supporting clinician to sit on the International EDS Symposium in NY, they grabbed the opportunity, set up a fundraiser to send a medical professional from Ireland, worked incredibly hard, but unfortunately, though they got in touch with many people, they could not find someone on time to send over.

This just shows to prove how badly the medical support for EDS is here in Ireland. We have a few Consultants and Doctors with an interest, but no experts unfortunately. Hopefully this will change soon after the Symposium and EDS will be better recognised and supported here.

Thankfully though, there is another follow up conference in Baltimore in June where the findings of the NY Symposium will be formally discussed, any funds that have been collected already for the NY Symposium will be repurposed for the Baltimore conference where hopefully they can find someone in the medical community to support us with EDS.

If you would like to support the Irish EDS&HMS fund to send a medical professional to represent Irish EDSers in Baltimore then please, please donate ‘Here‘ or click on the image below.

eds

Please click to support the Irish EDS & HMS Fund to send a medical professional to represent Ireland at the Baltimore EDS Conference.

This is so very important for the future of diagnosis and treatment of EDS here in Ireland. If a medical professional can go it means the information will be translated into the HSE quicker than if Irish EDS&HMS don’t get anyone and have to try and push the information into the HSE as patients or advocates themselves, they may not be taken as seriously or the information will not be treated as urgently as it would if us EDSers have the back up of a medical professional who already works within the HSE.

For the month that’s in it, here on Irish Dysautonomia Awareness, I will do my best to post regularly, share other people’s EDS blog posts share, photos, research and anything that will help spread more Awareness of EDS throughout May.

Thank you as always for taking the time to read and if YOU would like to share anything EDS related with us, a post, story, photo, drawing, meme, video, research, ANYTHING! Please get in touch either via our email: irishpotsies@gmail.com or on the blog here directly, through Facebook, Twitter or even our YouTube channel, and I will be sure to share it on here and through the social networks.

Cheers folks, Happy EDS Awareness Month 2016, let’s make it a good one if we can 🙂

FaintingGoatEDS

Irish Dysautonomia Awareness EDS Logo Version!

Blog Awards Ireland Long List Nominee!

11947628_10204373542489856_2683048717179121877_n

I am delighted to announce this humble little bloggie made the Long List in Best Health and Wellbeing Blog category in the Blog Awards Ireland 2015!!

Screen shot 2015-08-26 at 22.40.42 Longlisted-Buttons-300x2503
This is only a start, The long-list will be further reduced to a short-list, which will be announced on the 2nd of September 2015. The shortlist will then be opened up to a public vote which will begin on  7th September 2015 and stay open for 2 weeks. 

So if we make the Shortlist, which I think is a bit of a longshot, I will be onto you all again for a few possible votes! 🙂

This is only a small step but I am delighted because any cause for awareness of this condition is so welcome and needed.

Thank you to everyone who put this blog forward, I greatly appreciate it ❤ ❤ ❤

Stay posted to see if we actually get anywhere! 😉

Fainting Goat (Lette)

Extensive Dysautonomia Links

I am working on a couple of blogs at the moment including a review of my power wheelchair but that is being reviewed by the Occupational Therapist and the Wheelchair Rep. Next week so I will wait till after that to review it properly as many things on the chair need to be adjusted.

I am also working on a blog about how weather and air pressure affects people with Dysautonomia but I want to do a bit further research before I post it.

So, in the mean time, I thought I would share THIS!

An amazingly extensive list of Dysautonomia links over on the DINET Site. It includes links about dysautonomia and:

Anaesthesia
Baroreflex
Catecholamines
Chiari malformation/spinal cord involvementChronic fatigue syndrome
Dental Considerations
Diabetes and autonomic neuropathy
Disability
Ehlers-Danlos Syndrome (Joint Hypermobility Syndrome)
Exercise
Fainting
Fibromyalgia
Hormones
Hypovolemia
Lipodystrophy
Magnesium
Medications/Treatments
Mitochondrial disease and dysautonomia
Mitral valve prolapse
Multiple system atrophy/shy-drager syndrome
Norepinephrine transporter
The Nutcracker phenomenon
Outlook
Orthostatic hypotension
Paraneoplastic syndromes
Pheochromocytoma
Porphyria
Postural orthostatic tachycardia syndrome/orthostatic intolerance
Pregnancy
Research Studies
Support
Syringomyelia
Tests
and… Videos!

Be sure to check it out HERE and check out their main pages too, it is an excellent site and resource of information 🙂

Please Add Your Blog To Our Blogroll!

1438838700_34a14dea69_z

Are you a blogger?
Is your blog relating to chronic illness or health & lifestyle? Would you like to have your blog added to our blog roll on the right of this page?

YEAH?!!

Then leave a brief description and a link to your bloggy in the comments below and ill get adding 🙂

Hope you are all well? 🙂

Lette

ANNOUNCMENT: Be part of a free trial!

medistori-graphicIMPORTANT ANNOUNCEMENT FOLKS!!

To all Irish Dysautonomia Awareness members and followers.

I am delighted to announce that Irish Dysautonomia Awareness has been selected to trial an innovative personal health organiser – the MediStori FOR FREE to our members.

Creative Founder of the MediStori, Olive O’Connor is a mum of three daughters whom have complex chronic illnesses, and she shares her own journey and her discovery on how to make her life of tracking appointments, managing medications, getting diagnosed & communicating easier by keeping a specialised diary. Olive is now looking for patient/ parent feedback on this clever patient led initiative, with the aim for it to be rolled out in our health services nationally in 2016.

If you would like this once-off opportunity to be a part of the design of this care package, PLEASE GO TO: http://www.medistori.com/join-team/ and input your details . The MediStori is completely FREE to our members and followers so ensure you add our name (Irish Dysautonomia Awareness) in the “Where You Heard of Us” section and DO NOT go to PayPal links.

For this, all Olive asks for in return is to fill out two questionnaires so Olive can make the MediStori the best it can be. For more information you can call the MediStori Helpline on: 094 90 10114 or email: trial@medistori.com.

I have already received one of these packs and have to say it is an excellent idea and way of keeping track of everything medical for anyone with chronic illnesses. I hope to do a full review of it here on the blog very soon 🙂

Thanks again to Olive O’Connor from MediStori for this opportunity 🙂