Saturday Submissions – With Denis Murphy – Parkinson’s Disease and Self Expression

Parkinson’s Disease and Self Expression.

Hi, my name is Denis Murphy and I’m from Cork city. I am currently living in a little village in county Sligo.
A major turning point in my life came in 2007 when, at the age of 48,
I was diagnosed with early stages of Parkinson’s Disease.

I would like to share some of my thoughts, feelings and emotions with you as I believe by sharing, we can better understand what we are going through,
which often seems like a lonely struggle.
It can also bring a better understanding to our family, friends and loved ones.

We can get caught up in our own worries and forget that our disease or condition not
only affects our own lives but those around us and they often feel as frustrated and
confused as we do.
I am very lucky to have such an understanding wife.
She has had M.S for over thirty years so she has great patience,
empathy and understanding through her own experiences.

As anyone who suffers from Parkinson’s Disease,or has a family member who does,
will know and understand that it brings about drastic changes, both physically and mentally.
It can be very difficult for people with Parkinson’s to
express their emotions, feelings and
to cope with their loss of power and independence.

One of the many physical conditions is called “The MASK “.
This is when the face muscles become stiff and rigid and expressionless.
The eyes appear to lose their sparkle and the mouth seems to be
permanently in a “sad” position. To the outside world this appears as if the person with Parkinson’s Disease
( or PWPD for short) is uninterested, bored and
apathetic. But behind this stern facade lies a sea of feelings and emotions.

Another symptom of Parkinson’s is a problem with vocal expression.
The voice becomes weak and we lose our strength and with
this we begin to lose confidence in ourselves.
We find it more difficult to express our opinions
and ideas in public as we struggle to be heard.
So between difficulties with facial and vocal expression
we can withdraw into ourselves and stifle our emotions.
All the more need for an outlet to express these
emotions, feelings and fears.

So many PWPD find this through art, be it painting or crafts or writing.
While Parkinson’s Disease severely restricts our physical and mental activities,
there is one advantage.
Whether it is the disease itself or the side effects of the medication
but it seems to stimulate the creative areas of the mind.
So it is only in the last two years I have begun
to compose and express my feelings through my poetry.

The main themes of my poems are about coping with Parkinson’s Disease
or any disability and the fears and hopes and also about our
relationship with Nature and with ourselves.

So enough about me, I hope that you will enjoy the
rantings and ravings of a mad Corkman and that my words may
stimulate your mind and make you think about life,
changes, and above all, appreciate this wonderful
gift we have been given.

–  c/ Denis Murphy 23 April 2017. 

_______________________________________________

 Background information on the poem – A Parky in the Pub

This is the first poem I ever wrote about Parkinson’s. So it was an important step for me
in revealing my personal feelings and exposing my emotions publicly.
I used humour to write about a serious subject.
I do not like the term “Parky” but in this case it’s just a play on the word party.

______________________________________________

A Parky in the Pub

I’ll head down to the pub for a drink and the craíc
Sure I’ll be dead long enough on the flat of my back
So I make my way down to my local bar
On the other side of town for a chat and a jar
Some sit alone, some sit together
Talk of the match or of the weather
And after a pint or two
I need to visit the loo
So I shuffle and stagger around tables and chairs
Aware of the glances, the pity and stares
Through the noise and the clatter
The gossip and the chatter
I make my way back to my friends and my table
Slow progress but thank God I’m still able
The lads at the bar exchange advice and opinions
To the world’s problems and all their solutions
While the girls at the table share secrets and giggle
And walk pass the lads with a sway and a wiggle
The winking and nudging, the secret half glances
Some of the lads even fancy their chances
The smutty jokes and clinking glasses
The lad’s loud laughter like braying asses
As they drown out the music like crows in the nest
It’s time to go home for some peace and some rest
So I say my goodbyes in words and mumbles
And make my way home in staggers and stumbles.
The journey home seems twice as long
But I’m on the right road not gone wrong
Two steps forward one step to the side
Steady as she goes watch that stride
Left foot right foot no downward glance
Sure I might yet get to star in River Dance
– c Denis Murphy Aug 2015

______________________________________________________

Thanks so much to Denis for todays Saturday Submissions post. Be sure to check out Denis’ own blog and make a connection. I love the poem and the play on words here to show the symptoms of Parkinson’s akin to those of being drunk. How do you feel about his poetry, does it resonate with you? Be sure to leave some feedback for Denis and share the love! 🙂

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Advertisements

Saturday Submissions – With Ciara Chapman

In Today’s Saturday Submissions, I speak to the lovely Ciara Chapman from ‘My Chronic Pain Diary’,

Ciara is from Cork here in Ireland and is 34 years old.  As yet she is undiagnosed but has been experiencing chronic pain as a result of a nerve problem for 2 years now and she’s been getting through the experience by creating a beautiful illustrated diary.

Taken from the ‘About’ page on her site:

“I started ‘My Chronic Pain Diary’ in January 2016 as a form of Art Therapy to help me cope with the mental and physical toll Chronic Pain has taken on me. It’s a very lonely and isolating experience, even if – like me – you are fortunate enough to be surrounded by and supported by the people you love. I found the medication I was prescribed made it difficult for me to read, the words were fuzzy and I had my fill of television so I turned to my love of drawing. I hope by sharing this diary it will reach people in similar situations, whether you are experiencing physical, mental or emotional pain it is so important to remember we are not alone.” – Ciara Chapman – http://www.mychronicpaindiary.com

Please take a look at these images, I think they are so full of meaning, fun and life, very beautiful and excellently executed. I love them! Enjoy!

 

33_Twostepsforward

One step forward, two steps back.

3_Physio

Physiotherapy

5_OpinionAfterOpinion

Opinion after opinion after opinion…

7_Endless nights

Endless nights with little sleep

9_V2OutToSea

Out to sea

51_HelpWanted

Help Wanted.

52_RainRainGoAway

Rain, rain go away

53_Knowingyourlimits

Knowing your limitations

56_IveStartedMeditation

Meditation

14_Ifeelguiltysometimes

I feel guilty sometimes

36_TimeFreeze

Time Freeze

 

Thanks so much to Ciara for sharing her wonderful illustrations with us, they really are stunning, please be sure to check out her link above and make a connection and please leave a comment or feedback if you relate to any of these images.

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any word count) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Off To London Again!

Finally I have a date set to go to London for a consultation and possible treatment with a Neurogastroenterologist who specialises in EDS named Prof. Qasim Aziz at The Princess Grace Hospital.

I will be flying out on Saturday the 13th of May early Morning and the appointment will be at 12:30pm in London. I am going, not only because I have been recommended by my doctors here, both in Cork and Limerick that I should go for advice and more targeted help by a professional who knows EDS but because of all the trouble I have been having with my gut related issues, by far my gut problems give me the most trouble and upset with almost constant pain, nausea, vomiting and weight loss as well as occasional swallowing problems and my already diagnosed  Gut Dysmotility.

My Doctor in Cork is coordinating his treatment with Prof Aziz in London so I am having a Gastric Emptying Test on the Monday before I fly out which will help as one of the tests that needs to be done before going over. I have already had a Barium Swallow X-Ray done in February and thankfully that was all clear, so thats another test already down!

I am really hoping Aziz will help me out if he can, it would be great to finally get some sort of relief from all the symptoms. Even if he can get a treatment plan sorted that my Doctors here in both Cork and Limerick can do more needed tests and know what more to do with me, that would be a help in it’s self but he may also want me to complete treatment or tests in the UK which I can’t plan for until I know if that is even happening, so I will have to wait and see and I will keep you all posted as usual.

Keith, being my carer as well as my husband will obviously be going with me as there is no way I would be fit or healthy enough to do it all by myself.
Even as it is we have the flights over booked but won’t be able to book accommodation or flights home until we know more from the appointment, as Prof. Aziz may need me to stay over for further tests etc. So we will leave that until the last minute when we know more.

That’s kind of it for now until we fly over and it won’t be long before we will be at the day, it’s going to be a long day traveling for me and I am not the healthiest at the moment, I have had to cancel going to London from the last time until now as I wasn’t strong enough to go for a long time, but I can’t wait any longer and it must be done now. May was the closest appointment I could get so I took it.

I want to take this opportunity to thank everyone who fundraised and helped with my medical fund over the last while to help me get there, without you these trips wouldn’t be possible and with no EDS specialists in Ireland, with I as well as others fast running out of any help, we have to travel for treatment and help as we are completely alone here, medically, in Ireland.

Thank you all once again and I will keep you updated on everything that happens.

Lette (Fainting Goat!) xxx

Updates and Everything Falls In March!

I have been so unwell over the last few months that I have missed and had to reschedule a lot of hospital appointments and now they all seem to have come in March!

I was last admitted to hospital in November last but never got around to writing about it, I was in for a week with another bout of agonizing pain in my right side and gut, all stemming from the Sphincter of Oddi Dysfunction/ Gallbladder pain I had been having all along and that already hospitalised me over 4 times in the one year previously. They took real note of my weight loss this time and started me on new calorie drinks, some new meds, as well as doing some further tests, ultrasounds and abdominal X-Rays all leading up to a second ERCP on the 28th of March, of which I will write about below!

Yesterday I had a manual wheelchair assessment with my Occupational Therapist, I have now been measured and fitted for a new manual chair as my current one is loose, rickety and near impossible for himself and myself to push, not to mention that it is far too big for me at a size 18 where I need a size 14 or 15. Yesterday, I was fitted for the new Invacare Action 3NG  (In Ocean Blue!) and have been put on the funding list for it, which means if approved, I will get the chair through the HSE but if not I simply wont get it at all, especially since I was already approved for a new Motorised Wheelchair (Invacare Spectra XTR2 Pictures Below) a few months ago (But is only good for outdoor local use and we do not have a modified car to transport it so I need a manual one to use in the home and transport) There is no guarantee that I will get approval for the manual one, We will just have to wait and see.

14720441_10206859575799135_7321704647309660317_n

March kicks off with my birthday on the 5th, I have nothing planned only to celebrate with hospital appointments which start on Monday the 6th with a follow up appointment with my doctors who look after my Pots care in UHL. This usually involves looking at the current meds I am on, seeing if they need an update, they ask about my symptoms to date and see if I require another Tilt Table Test or some other tests etc. This will have been my first ‘Pots’ appointment in over a year now so it will be good to catch up and see if any changes are needed.

 

Wednesday of that same week, the 8th, follows with a Urology appointment to check my kidney and bladder function. This Urodynamics Test needs to be done every 6 months or so now that I rely on catheters for painful urinary retention, it can leave you more prone to kidney and bladder infections and kidney dysfunction so that needs to be checked frequently to try and catch infections and Kidney dysfunction as early as possible to prevent any damage.

mri_of_human_brain_with_type-1_arnold-chiari_malformation_and_herniated_cerebellum

Image of a Type 1 Arnold-Chiari Malformation. The cerebellum has descended 7mm and there are herniated cerebellar tonsils into the foramen magnum. – Wikipedia

The next day, Thursday the 9th, I have an MRI of my neck and spine, as ordered by my Pain Specialist, to try and rule out Chiari Malformation or other complications because of the severe pain and headaches I am getting coming from around the base of my skull/ top of my neck area, I already get ‘Occipital Nerve Blocks’, for that and ‘Sacroiliac Joint Nerve Blocks’, for the pain I get in my lower back and hips, but I find these nerve blocks are only helpful for a very short period of time (sometimes, if at all!) and are not advised for long term treatment. I have been getting them on and off for over 3 years now altogether as well as continuously taking two types of Opiates (Fast and slow release), meds for neuropathic pain, anti-inflammatories and also muscle relaxants, daily, even with all of these and the injections there has been no proper ‘cure’, especially for the severe neck and head pain, if anything that has gotten worse, so he wanted to investigate that further. We spoke and he explained that he understands that EDSers usually don’t show any evidence of Chiari during a lying down MRI, it is preferred that an upright MRI is performed for a more honest view, however there is no upright MRI in Ireland, one of the closest being in London. I may not need an upright one at all, we will see what the lie down one shows first but he said he would refer me to London if needs be. I will also be returning to London, (privately as none of this is covered by the HSE!) to see another GI specialist that specialises in EDS very soon and I will also see what that specialist suggests I do because the pain and headaches have me bedbound most days now and have worsened my quality of life, where it was very low to begin with! 😦

The following Wednesday the 15th I am back down to Cork University Hospital to see the new private GI specialist I started seeing in November just gone. I won’t mention Names here but, he was recommended to me by a good few people on the Irish EDS related Facebook Pages stating that he is an excellent GI specialist who is very well read up on EDS (Also having studied and worked with the private GI Consultant who specialises in EDS, in London, that I had already heard about (and spoke about in the previous paragraph) and had planned to go and see.) It was recommended that I see him before going straight to London as he can do (in Cork) a lot of the tests they do in London, so I said I would give him a go, and I am so glad I did.

I have to say first that My Limerick GI Team in UHL are fantastic in that they have tried almost every test they could to see what is causing all my gut trouble. Since starting all the GI investigations in December 2014, up to now, they found out that I have ‘Gut Dysmotility‘ and ‘Sphincter of Oddi Dysfunction‘,  but beyond medicating and treating me for those, they do not know what is causing my Nausea, Vomiting, Trouble Swallowing and Severe Gut Pain that has hospalised me more than 4 times in the last year, nor do they know why I have lost over 3.5 stone and continue to lose weight even though I am keeping my calorific intake as high as possible on as many days of the week that I physically can. The team have read up on EDS where they have needed to and continue to educate themselves as we continue to investigate (The tests in Limerick are ongoing, even with another ERCP Operation with Bile Duct Sphincterotomy (where they cut the muscle) at the end of this month) but I feel we are still coming to a dead end, Especially when the symptoms have eased only a little and ultimately continue to cause daily trouble and the head GI specialist of the Limerick Team came to me already and said that it would probably be better if I went to London to see what ‘The EDS Experts’ have to say. So on hearing about the GI doctor in CUH who knew his EDS, I made an appointment and went down to see him and get his advice before I decided to go straight to London.

 

The first Cork appointment came in November and I was pleasantly surprised when I met him. He was very well read with regards to EDS, listened to my full medical history, symptoms, complaints, procedures, tests and operations that I already had. Went through the medications I was on and went through some with me that I had never heard of before but he wanted to do a few tests and X-Rays before changing my medications. When he heard I was interested in going to the GI specialist who he trained under over in London, he was delighted to refer me over and suggested that it was a great idea to get his opinion as he would have the most expertise when it came to treating GI trouble in EDS patients and he thinks this London specialist should be able to help me.

He immediately wrote up a referral letter as I was there as well as booking me in for some new tests in Cork hospital that are not available in Limerick. He said these test appointments would be sent to me in the coming weeks after the appointment and sure enough, they did, they came through very fast, a lot faster than I have experienced in Limerick. I had a Barium Swallow X-Ray done in January and still waiting on the results of that which will probably be given during the clinic appointment I have on Wednesday the 15th of March and I am currently waiting on a Gastric Emptying Test appointment which should arrive, I am told, in the next few weeks. Either way I am very impressed with this Cork based GI Specialist who knows his EDS, I will certainly stick with him, as well as the Limerick team, for now while I wait for my London appointment to come through.

Not finished yet! I have a Gynae appointment in the Maternity Hospital on Monday the 20th. Then that Friday the 24th I have an EEG back at the UHL and finally, The Big One! I have another ERCP operation thingy with a Bile Duct Sphincterotomy the following and last Tuesday of the Month, the 28th.

 

The ERCP and Sphincterotomy is to treat the severe pain, nausea and vomiting I am having because of what the GI doctors in Limerick think is Sphincter of Oddi Dysfunction. I have written and You can read about SOD and the ERCP procedures HERE.

I have already had the first ERCP procedure where they injected Botox into the SOD and you can read all about how (Kinda bad, though it inevitably worked!) that went HERE.

and that’s it!! That covers all appointments for March only! Every month there is usually something and it feels like, I only get out for doctors appointments these days! but what can you do?! 🙂

Lette xxx

Hearing Difficulties -Possibly EDS Related?

img_0429

Yup, those are my earbots!

I haven’t actually needed these for the last while. When I’m at a certain level of hearing I get used to it and end up not wearing them unless I’m having a really bad hearing day (yes, it goes up and down on occasion, which is frustrating!) but my hearing is gone really very crap again, I’m not hearing Keith when he is talking to me and I’m missing things, so these ugly boys are out again. :/

I have had severe bilateral hearing loss and consistent ear trouble since the age of 7.

I don’t talk about it much as it embarrasses me and I just get self conscious if I know that’s what other people are thinking about when they talk to me, plus they always want to test my lip reading, which is a nice party trick but isn’t that easy to do on the hop, as you must consider all context of the conversation, you also must be somewhat used to the person you are talking to. I find it takes me a little time to get used to talking to someone new before I am comfortable enough around them to ‘get’ what they are saying and it takes me even longer to get used to a bearded man. Everyone pronounces things and moves their mouth differently. I find a tiny bit of tone or sound helps me also as that is how I’m used to using it.

On my last hearing test, which was over 6 or 7 years ago now, showed that my left ear has only about 15% hearing remaining and my right has about 35% hearing. It certainly feels as though it’s a lot worse now!

It is called SensoryNeural Hearing Loss, caused by underdeveloped Eustachian Tubes that are dysfunctional, middle ear disease (where the 3 tiny bones in my ear behind the eardrums are wasting away) and also Adult Otitis Media.

Hearing problems also run throughout my dads side of the family anyway.

My symptoms throughout my life include:

1: Constant fluid build up in the middle ears (called glue ear in kids) causing wastage of the middle ear and mastoid bones and ‘leaky ears’, adding to the hearing loss accumulativly over the years and will probably continue to do so as I get older.

2: Reoccurring ear infections causing further fluid and damage.

3: Shooting sensations of random sharp pain in the eardrums.

4: What feels like spasming of the eardrum or close muscles.

5: I produce little or no earwax which serves to protect and moisten the ear, so my ear canals are narrow and raw with dry, flaky, very itchy inner ears.

6: and probably the most annoying – are clicking, crackling and ‘ocean’, sounds coming from deep in my ear. (Like if you put your ear to one of those seashells, I could never actually hear that!) I sometimes hear my heartbeat clicking too, especially if I lie down and also sensations of ‘breathing through my eardrums”, it’s the only way I can describe it. As I breath, I can hear and feel my breath escape through my eardrums causing sharp pain and the feeling of movement as I do so.

This, according to my ENT surgical consultant, is because my Eustachian tubes are always closed and dysfunctional. Sometimes they open up like normal people’s ears and the feeling is so alien to me because I’m simply not used to it that way!

Looking back now, I would’nt be  at all surprised if it was somehow associated with my EDS.

I have had 12 operations on my ears under general anaesthetic which have scarred my eardrums irreparably making them very thin, fragile and they rupture very easily.

I have worn hearing aids since the age of about 12. I learned to lip read from an early age to compensate for what I was missing in school etc. and I learned some Irish Sign Language in my college years (not fluently at all!)

I was diagnosed as clinically deaf at the age of 19 but it’s not like I can’t hear anything!!

I have a lot of difficulty, especially with background noise, I have dropped notes while listening to music because I can’t hear some frequencies, or in a group situation, where I’m speaking either too soft or too loud because I can’t determine my own volume! but in general, if I’m one to one with you, I’ll watch your mouth and catch a lot of what you’re saying! (Please don’t mind me if I look like I’m checking you out, I’m not, really!) :p

I have been referred back to my ENT surgical consultant now so hopefully I wont have to wait too long to see him to see what he says and what the updates are.

Apparently I hide it well, I dunno though, I ask “WHAT”? A gazillion times a day like!! :p
So, have you any hearing difficulties that may or may not be associated with EDS or your particular chronic illness?

Let us know and share your comments below. 🙂

Thanks for reading, and as always, feel free to share – Lette (Fainting Goat)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! 🙂

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

9at8VqHyRMi4E9iScv0e_Nominate

Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post Please and thank you most kindly! as far as I can figure, there’s no harm in trying! 🙂

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

Blog-Post-Button-e1463408928620

Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

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!