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!

 

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One step forward, two steps back.

3_Physio

Physiotherapy

5_OpinionAfterOpinion

Opinion after opinion after opinion…

7_Endless nights

Endless nights with little sleep

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Out to sea

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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

Looking for Guest Bloggers Please!

guest-blogging

 

Hi folks,

I am still on the lookout for guest posters for this little bloggie, I would appreciate hearing back from anyone with or in contact with a chronic illness. Patients, Partners, Family, Friends, Carers, Therapists, Doctors, anyone who would like to take part. If you know of anyone who might like to, please share this with them, thank you!

It can be completely anonymous or open, whichever you prefer, please just follow the steps below to take part and I really look forward to hearing from you 🙂

Also, a very BIG Thank You to those who have submitted something already, I hugely appreciate the efforts, thank you 🙂

——— Wanna Be Part of Guest Blog Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) 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

 

 

Lette 🙂

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

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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.

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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!

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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!!

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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!

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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 🙂

 

Rare Disease Day – Irish Dysautonomia and Rare Disease Awareness

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Hi, I’m Lette and I have the rare diseases, Dysautonomia, EDS (Ehlers Danlos Syndrome), Pots (Postural Orthostatic Tachycardia Syndrome), NCS (Neurocardiogenic Syncope) and Gastroparesis.

What are these conditions?

Dysautonomia is the malfunction of the Autonomic Nervous System (ANS). The autonomic nervous system is a control system that acts largely unconsciously and regulates the heart rate, blood pressure, digestion, respiratory rate, pupillary response, temperature, urination, and sexual arousal. It is an umbrella term for various forms of ANS malfunction including Pots.

Pots or Orthostatic Intolerance is when you cant regulate your blood pressure and heart rate when you change from a supine or seated position to an upright position. For instance in my case, when I stand or at times sit up, my blood pressure plummets, heart rate increases, my blood pools in my legs and oxygen is reduced to my heart and brain and makes me presyncope if not completely faint a lot of the times. This Fainting is caused by NCS or also called Vasovagal Response/syncope. POTS is often accompanied by vasovagal syncope, with a 25% overlap being reported.[1]

Diagnosis usually requires a Tilt Table Test (TTT) and can show persistent increase in heart rate of at least 30 beats per minute (40 bpm if under 19 years of age) within ten minutes of standing.

Symptoms include:

NCS or Vasovagal Response/Syncope. From the wiki:
“There are different syncope syndromes which all fall under the umbrella of vasovagal syncope. The common element among these conditions is the central mechanism leading to loss of consciousness. The differences among them are in the factors that trigger this mechanism.”

Ehlers Danlos Syndrome Type 3 (Hypermobility Type) is a group of inherited disorders that affect your collagen which is in practically all elements of your body, skin, hair, nails, cartilage, bones, blood vessels, organs and eyes. As such this condition affects those structures in me causing broken bones, dislocations, subluxations, damage to joints, muscles, skin, organs, easy bruising, bleeding, severe pain, my eyes are affected and I am hard of hearing. I also have gastrointestinal issues including Gastroparesis. EDS also now has me in a wheelchair because of pain and instability in my pelvis, hips and lower legs.

Gastroparesis also called Delayed gastric emptying or Gut Dysmotility is when there may be partial paralysis of the stomach or intestines causing food to stay in the gut for an abnormally long period of time. This causes me chronic nausea, vomiting and at times severe pain.

There is no cure for any of these conditions, they can be managed with medication but flare ups are frequent and the conditions can progressively get worse over time even while being managed with meds.

My Diagnosis and first hand experience of treatment in Ireland

I was diagnosed with Pots in April 2011 after nearly a month in hospital and a ton of tests because of severe low blood pressure and constant fainting on sitting upright or standing. My first doctor after 2 weeks said to “Get out of bed and move around, you’ll be fine”, I was still fainting all over the place so needless to say we asked for a letter (being sure to put it in writing) stating that he as a doctor thought I was fit enough to be released. This letter never materialised and we asked for a second opinion.
The new doctors team did a serious amount of tests over the course of another 2 weeks or so and they found that I did infact have something wrong, an impressive case of a condition called Pots with NCS. I was started on a course of medication and told to research my new ailment and they would check on me with regular outpatient visits.

During this research I noticed that EDS was commonly associated with causing Pots and NCS and it explained a history of symptoms that I had experienced prior to all this. I approached my consultant about this when I next saw him and he was very dismissive. He agreed I had hypermobility but called it benign and that it wouldn’t need treatment, despite my symptoms.

Many hospital admissions later the dismissive nature continued and I quickly found out that there are no EDS Specialists in Ireland. There are no Dysautonomia Specialists either. The first step to seeing if I did have EDS was to meet with a Rheumatologist in Cork who had a special interest in Ehlers Danlos. This was October 2012 and after a consult with him, he had clinically diagnosed EDS Type 3 with possible overlaps of other EDS types, and recommended meeting with Prof. Rodney Graham in London who specialises in EDS and other Hypermobility Syndromes for a definitive diagnosis and treatment plan.

In and out of hospital a few more times, but start to feel well enough to start back to work in 2013, I absolutely loved it and still had good and bad days but could manage until the pots got worse again and the pain in my hips got so bad that I ended up in a wheelchair and was advised to stop working again within 6 months of starting.

A few more ambulance rides and hospital admissions later, my health was deteriorating and in May 2014 I started having seizures. The drugs I was put on turned out to make everything worse and I ended up in the ICU after having a 2hr 40min series of seizures. I was sent to Beaumont for tests and it turned out I didn’t seem to have epilepsy but that the first seizure may have been a once off due to the lack of oxygen to my brain after one of my faints and then the drugs they treated that seizure with, I ended up having a strange reaction to and they made the seizures worse. It took 3 months in and out of hospital to realize this and now that those drugs have stopped, I am delighted to say haven’t had a seizure since!

During these few months of being in and out of hospital with seizures, I set up a fund to help me get to London to see the Hypermobility specialist as there was no way I could afford to do this on my own. I got an amazing amount of support from family, friends and complete strangers of whom I cant thank enough! I got to meet Prof. Rodney Graham over in London in August 2014 and got a confirmed diagnosis of EDS Type 3. He wrote to all my doctors with the confirmed diagnosis and gave them advice of how my treatment should advance going forward. Advising that I return to London to get help with my Gastro and autonomic problems and referring me to Harolds Cross would be of great value to me. I am currently waiting for a referral for this since August 2014.

If proper systems were in place in this country, there would be no need to have to go to London for a basic diagnosis. But as there are no specialists or centers here and even a steady level of doubt among some doctors as to whether EDS is even a considerable diagnosis, even after being clinically diagnosed by a Rheumatologist. They didn’t seem to realize that there is no genetic test for EDS type 3, it can only be clinically diagnosed but they still doubted it from the rheumatologist in Cork. Once the letter came back from Rodney Graham on the diagnosis however, attitudes seemed to soften a little.

I was back into hospital in November and December 2014 with Gallbladder dysmotility and Gastroparesis. The level of care under this new surgical team of doctors was amazing and they were very willing to learn more about EDS and how it affects everything.

Today I take 18 tablets a day, need injections, pain management, physio, occupational therapy, have a full time carer (My amazing husband), I continue to faint and sometimes do so without breathing for long periods of time, I rely on a manual wheelchair but require a motorized chair, but I have been waiting for that for over a year now. Thankfully, though there are a few negatives through all these diagnosis, I have met phenomenal nurses and carers, amazing doctors and consultants willing to learn but the shortfalls are evident to any of us who are a patient or carer, we can clearly see that the health system needs a serious reform. So too do the social welfare systems, there are huge difficulties getting access to certain things which people are entitled to. The dietary supplement, Mobility allowance, mortgage interest supplement for example has been cut to new applicants, however those who are already getting these payments can continue to do so. The carers respite grant has been reduced and there are huge limits and difficulties in getting access to things like Housing Adaptation grants and the Drivers and Passengers with Disabilities Tax Relief Scheme. You can read more about that here.

Thankfully the Rare Disease Plan 2014 to 2018 Plans this major reform of the health service and the supports currently in place delivering better access to high quality service and care for both patients and their carers. You can read all about this proposed plan Here. However there has been no recent updates as to when it will be actively pursued and implemented while all of us currently with rare diseases have to wait in a system with no specialists, no treatment, no care. We have to travel to London when things like the Travel Abroad Scheme (TAS) is there within the HSE to send people abroad for treatment but it is not being offered or is being refused the majority of times to those who apply for it saying their care can be fulfilled here in Ireland when it can not!

In the meantime online communities like EDS Awareness Ireland and Irish EDS and HMS are pushing to appeal for awareness, support, recognition, specialist treatment and care and funding for our rare diseases.

We are Fainting goats, we are Zebras, we bend but we are not broken, we have invisible illnesses but there is always hope and the will to spread awareness of these conditions and difficulties. Lets make our voices heard.

Thank you for reading.
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Follow Irish Dysautonomia Awareness on Twitter, Facebook, Youtube & Spreadshirt and if you would like to support Lette to help her get back to London for proper treatment, you may find her Fund Here, Thank you.