The Sphincter of Oddi and Other Stories!

Say that in the voice of the narrator from He-Man and you have a pretty formidable title there!

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The last time I was admitted to hospital at the end of March, early April the surgical team came to the conclusion that I could possibly have something called Sphincter of Oddi Dysfunction (SOD) that was being masked by what they thought was Gallbladder pain.

In the last blog post I outlined what this was and that there is a test to check for it called an ERCP, endoscopic retrograde cholangio-pancreatography, a procedure that uses an endoscope and looks directly deep inside the duct system while taking pictures and measuring pressure. You have to be sedated or under general anesthetic as it is way deeper into your system that they have to look than a regular esophageal, stomach endoscope or similar.

While they do this, they inject some Botox into the tiny sphincter itself which relaxes it and allows it to open again. If after about 2 weeks your pain is gone, this is a sign you have the dysfunction. Sometimes if the pressure in the bile ducts is measured as too high or if the surgeon deems it necessary at the time they will cut the sphincter muscle first time.

Cutting the sphincter of Oddi muscle surgically during an ERCP is called a sphincterotomy. It’s generally effective and relieves symptoms of SOD about 70% of the time.

The long term cure for it? a series of ERCP’s where again I will be put to sleep and they have to cut the sphincter to weaken it to the point where it can’t clamp up any more. This should take a few turns because if they do it all at once and cut straight through it, there is serious risk of heavy bleeding and Pancreatitis with this so they do it in small stages over time to make it safer.

A video of the procedure can be seen here, if you have the stomach for it! ;)

Since coming out of hospital in early April, I have had a number of follow up appointments. I’v been seen by a gastroenterologist in Nenagh General Hospital. He reviewed my case and changed my pain meds saying that the morphine I was on was a spasmodic drug and wasn’t helping the pain in my side so told me to ween off them and start other anti-spasmodic drugs which he prescribed. He also gave me new antiemetic meds for my stomach and gut as I am constantly having trouble with it. He said getting back over to London to a GI specialist over there when I am well enough is greatly advised, but to wait until I am well enough.
He also prescribed me with a spray for under your tongue, usually used for people with angina but said as it’s job is to open the blood vessels and relax muscles that it may help the pain in my side, and it really does, although drops my blood pressure and gives me a cracking headache but I would rather have that than the pain in my side!

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I have been to the Pain specialist in Croom hospital for more injections into my Sacroiliac joint and hips which usually takes about 3 days to a week to kick in, but of course I got cocky and tried to hobble out of the bathroom the day after getting them, without any chair, crutches or support, thinking I could do it and SMACK! I slapped off the ground hurting my hip, but thankfully not seriously so it has healed again and the injections have slowly begun to work to ease the pain in my lower back and hips. Unfortunately though they only ever last about a month so I am coming to the end of that relief already.

11205026_10203754927464867_7609355477687548601_nI was back into the University Hospital Limerick for a follow up from when I was admitted last and to see when my ERCP will be. I was told I should be called sometime this month so I am currently still waiting on the appointment and hopefully I will be called soon as it is getting very sore and uncomfortable.

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and finally… My powered wheelchair finally arrived! I had to chase it up through the local OT manager because I was getting nowhere emailling my OT about it. The manager got things moving immediately once she knew I had been waiting nearly 2 years and the replies to my emails were just one excuse after another, it finally arrived a couple of weeks ago, Miles too big for me, refurbished and not new but mine, great fun and gives me great freedom! The powered chair deserves a blog post of it’s own so I will do that as the next post. It’s name is Marvin and I’ll explain where that came from too! :)

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For now, that’s all my current news! :)

Admitted To Hospital, Possible New Diagnosis

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This was me getting ready to go home so I look a lot happier than when I was admitted first!

Oh dear! it happened again!

On Monday the 30th March, I was taken to hospital by ambulance after being bed bound and in severe pain with my gallbladder all over the weekend. I held out as long as I could at home because I knew nothing would be done over the weekend if I went into A&E.
On the Monday, things just got a little too much for me and we had to call for me to be taken in.

I am very disappointed with my GP in all of this. I had gone to him a couple of weeks before this happened, with a renewal script for some very strong pain killers that were prescribed to me when I was last admitted to hospital for the same thing in December. My surgeon had prescribed these opiate based drugs for the pain that helped and were needed. When I went to my GP to renew, he said only Cancer patients get these drugs and that he wouldn’t renew my script even though a higher authority than him prescribed me what I needed!

Then, when my Gallbladder pain started up again last week, we called him about getting referred into the Acute Surgical Unit (ASU) in the University Hospital Limerick, as this was said to me the last time I was in, that if I had more pain, not to go through A&E but to be directly referred in. He didn’t come through on this either. When we rang he gave some excuse about not having my files with him in the surgery he was at (His 3 surgeries computer systems are linked, he should have had all my information in front of him!) and when he called the ASU he couldn’t organise a bed for me so when everything got too much, we just called an Ambulance anyway and I had to go through the A&E system like everyone else. Which is fine but it was unfortunate the GP couldn’t come through. He has been very angry lately when we visit him. He is constantly giving out and very bitter about the HSE (Health Service Executive) and he complains to his already sick patients, This is not just coming from me but from other patients of his that I have spoken to. To be honest I am getting sick of his attitude and shortly I will be transferring to a lovely lady doctor who has come highly recommended!

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My hand reacted strangely to the morphine, the IV line was hardly hanging in my vein too so it didn’t last long!

So I was in the A&E about 10 hours, They did a chest XRAY first, then I was being pumped full of morphine through an IV line that was barely hanging on to one of my tiny veins. The doctor in A&E had tried about 5 times to find a vein and by the time I got to the ward the Line had already failed and they had to call another doctor up to fit a new one. He had some trouble and tried about 8 times before he got one and again it was just about in the vein and he said it may only last a few hours. My veins are useless and over the next week, I had three more doctors try about 18 more times to get veins and each line would fail or they just couldn’t get access, eventually during the week they give up on me and give me oral antibiotics when I am able to take them.

Just as I was in my ward Bed and getting ready to sleep, it was about 2am and they called me for an abdominal XRAY. It was over before I knew it, I was back to bed, Injected with something that helped the pain, popped on a drip and I tried to get comfortable enough to sleep.

Not a single wink was had!

It was quiet and all on the ward but I was sore, the surroundings were different, there were beeps and talking in the background and just everything that home wasn’t!

I was uncomfortable and twisted and turned through the night and into the next morning.

The following morning the surgical team came to see me and discuss my case, The same doctor and team that had me in December. He mentioned that he was happy to see me again but not under these circumstances and he felt by looking at me that I had lost weight. They ordered an ultrasound of the gallbladder so that they could compare it to the one from December when I was in then.

At that time my gallbladder was distended and had fluid around it showing infection. It didn’t respond to the fat test and showed it had dysmotility as well as gut dysmotility.

This time the ultrasound came back normal, no sign of infection in it or in my bloods. They mentioned about the possibility of taking out the gallbladder but as it looked healthy with the worry that my EDS may slow or aggravate healing, they were reluctant, as was I!

The head doctor said to give him some time as he wanted to speak with a colleague, the Dean of the Medical School at University Hospital Limerick, who knew surgeons in the UK who deal with rare cases like me. So now the waiting game begins!

I have to say he and his team are excellent. They have a real interest and go to great lengths to diagnose and be careful about removing anything they shouldn’t unless they absolutely have to! They also have an interest in learning more about EDS which is great to see. Unlike some of my other doctors who just don’t seem to care at all.

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Gadgety Bed!

Most of the time I was trying to sleep on the very comfy gadgety bed that I could move into all sorts of comfy positions or stoned out of it so all I could do was lie there in a sweaty trance trying to ignore pain and wishing sleep would come to me!
My BP was very low as I hadn’t been eating for many days due to horrible nausea and vomiting so I had missed my regular meds for those days. Over the week, once the nausea was controlled I was taken off the fast and put on a light diet, I could hardly eat anyway but getting a tiny bit of nutrition really helped. I was also able to take my regular meds which helped normalise my BP and I began to feel a little human again.

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Mostly pain meds, an antibiotic and meds to raise my BP

On Friday, as it was coming up to the long weekend I was eager to get home, though still in pain and I had no clue as to what they wanted to do with me, I asked what was the possibility of me going home for the weekend? and they said no problem as long as I was prescribed everything I needed! YEAY!!! I was delighted then everything came together! I was visited by some doctors and got some information, finally!

I was seen by a pain specialist, she was going through my pain meds and what I needed to be comfortable at home until they call me into them next week where they can review everything and make a pain management plan going forward.

Later on, I was visited by a UK Surgeon, The Dean of the Medical school. He told me he trained and studied under Prof. Rodney Grahame (The Prof. in London who officially diagnosed my EDS) and highly respected his opinion. I was delighted to speak with him. He was a gentleman and explained to me what he thought was going on.

They as a surgical team discussed my case and came to the conclusion that the gallbladder may have been masking the true pain that could be coming from a thing called the ‘Sphincter of Oddi

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I know right, WHAT? Never heard of that before, but long story short, there is a little valve thingy under your gallbladder that allows bile though it to add to the pancreatic juices that feed into the digestive system to help you break down and digest your food. This sphincter opens and closes but if you have this dysfunction, it remains clamped shut and cramped and causes a back up of bile and severe abdominal pain. It is most common in people who have already had their Gallbladder taken out, I still have mine so it is a strange one!

There is a test to check for it called ERCP, endoscopic retrograde cholangio-pancreatography, a procedure that uses an endoscope and looks directly deep inside the duct system while taking pictures and measuring pressure. You have to be sedated as it is way deeper into your system they have to look than a regular esophageal, stomach endoscope or similar.

While they do this, they inject some Botox into the tiny sphincter itself which relaxes it and allows it to open again. If after about 2 weeks your pain is gone, this is a sign you have the dysfunction.

The cure for it? a series of ops where again I will be put to sleep and they have to cut the sphincter to weaken it to the point where it can’t clamp up any more. This should take a few turns because if they do it all at once and cut straight through it, there is serious risk of heavy bleeding with this so they do it in small stages over time to make it safer.

This procedure however, has never been done in the University Hospital Limerick and it is not licensed here. But they are seeing what they can do for me, if it can be done, I will be the first person they will have done this op on! If they cant license it here, I may have to go to The Matter Hospital in Dublin or even as far as the UK if needs be, however because I am being treated publicly, these procedures if done in the UK will be fully covered by the HSE. This is a huge relief!

So in the mean time, He and the surgical team looking after me are going to sit down with some other doctors in a Multi Disciplinary Meeting where they will discuss my case and how to proceed with it and once they have a plan in place they will call me in for the initial test. I feel kinda special! but I can see why this meeting needs to be done. If I do have this thing, those procedures need to be licensed and I am sure that includes some amount of paperwork!

So for now, I am happy to be home with the furry pup and himself, I am comfortable (enough) on the pain medication and I await my appointment for next week to be called back in to the Pain clinic and then the appointment to be followed up by the surgical team.

For now, I will try to relax and recover, it is hard on this medication as it has some nasty side effects, but if it helps the pain I cant complain! HA! could put that on a T-Shirt!

Anyway, that is all for now, I will update again soon :)

Lette (Fainting Goat)

Oh Dear! Spare a Few Likes!

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Hehehe! As you can see we are stuck on a funny number of likes over on the Facebook Page! If you have a moment, please click in and give us a like, Thank you! :)

While you are at it, check us out at these following links, I would love to hear from you :)

Facebook
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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 :)

 

Great News! An Interview With Dr. Mustafa Ahmed, I Need Your Questions!

If you remember a few posts ago, I had mentioned I was looking for people to contribute to the blog by submitting some articles or anything they would like to share. That offer still stands to all of you but I am delighted to announce that on Friday, I was approached and offered an interview with Dr. Mustafa Ahmed, the interventional cardiologist who created The POTS Center.

Mustafa Ahmed MD, is a Cardiologist and Scientist, internationally recognized in areas including valvular and surgical heart disease and POTS. He was born in Nottingham, England, he went to medical school at the Victoria University of Manchester. After graduation he took postgraduate positions at the prestigious Manchester Royal Infirmary, Manchester, then the Queens Medical center, Nottingham. Dr Ahmed then moved to UAB where he was the first ever person selected for the highly competitive Physician Scientist Training Program with specialization in cardiology and interventional cardiology. – myheart.net

We discussed the possibilities of how best to approach this and I thought, why not open the questions up to all of you lot, the community reading this? Then everyone can contribute and have their questions answered by Dr. Ahmed.

If you have a POTS related question that you would like answered please get it to me before Monday the 23rd of March. Feel free to either email me on irishpotsies@gmail.com or leave a comment here or on the other social networks. Facebook, the private Facebook Support Group & Twitter

I am really looking forward to passing all our questions to Dr Ahmed and I thank him for this opportunity to raise more awareness :)

Get your questions into me, cant wait to see what you come up with!

Lette :)

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.

 

 

Show Your Stripes for Rare Disease Day! – Guest Post

11016369_10205031264693934_216013319_nIn 2012, Yvonne Evans interviewed a woman from Kinsale about her disease, Ehlers Danlos Syndrome (EDS). Little did she know that the answers she has been searching for about her own illness had landed right on her lap.

There is an old saying within the medical profession: ‘When you hear hoof beats, think of horses, not zebras’. Dr Woodward, an American professor at the University of Maryland would instruct his medical interns to practice as the phrase suggests. You see, horses are common in Maryland, while zebras would have been relatively rare during the 1940s. So, one would assume that, upon hearing the sound of trotting hooves, that a horse would be the most likely explanation. I however, am a zebra.

11039423_10205031264493929_1594412320_nMy symptoms started as a child but and really got bad by the time I was 14. Gradually, my knees began to hurt, especially when it was cold. By 16, it was unbearable. A few years later, the pain spread to my hips and ankles. The joints began to make popping and clicking noises. Frustratingly, blood tests for arthritis and x-rays all came up clear. Then I began to have problems with my stomach and experiencing fatigue. In college, I was vomiting almost everyday for a year and napped frequently. The fatigue hasn’t stopped to this day.

A colonoscopy and endoscopy came up clear but my GP said it was irritable bowel syndrome. Some days, my abdomen swells so much that I look pregnant. After my son was born, five years ago, I had no choice but to fight the fatigue. I am not anaemic, but as the months have turned into years, the tiredness has become overwhelming. The smallest of chores around the house are exhausting for me. Some days, I don’t even have the energy to get dressed and face the world.

People commented on this and called me lazy. Without a diagnosis, I couldn’t give them a credible answer as to why I was sitting in my pajamas in the middle of the afternoon. Of course, I did have my good days, especially during the summer when the weather was warm and my joints didn’t hurt as much. But, while my joints were feeling ok, I was feeling dizzy and faint, more fatigued and irritable. Cold hurt me, heat made me faint, there was no relief.

For the past two years, the joint pain has spread to affect my hands and wrists, my back and neck too. If I move a certain way, a joint may slide out and back in again.

But things changed for me in 2012 when I interviewed a young woman who had connective tissue disorder called Ehlers Danlos Syndrome (EDS). When she explained her symptoms, I wondered did I have something similar? I thought no more of it, and we kept in touch. In the meantime I was put on a public waiting list to see a rheumatologist. But then, one day in 2013, I was speaking on the phone and then everything started to go black; I felt hot, my heart was racing, I felt weak. I ran to the bathroom to lie down on the cool floor. This gave me such a fright that I decided I wasn’t prepared to wait two years to see a public consultant. I had to know what was wrong with me. I was going to get answers.

I organised a private appointment with a physiotherapist who confirmed that I was hypermobile. The pieces of the puzzle were coming together. Then I arranged an appointment with a rheumatologist in Cork, with an interest in EDS and Hypermobility Syndrome. Two weeks later, the doctor confirmed that I had Hypermobility Ehlers Danlos Syndrome. I was also diagnosed with Dysautonomia but unfortunately; I am still awaiting a proper diagnosis and treatment for that.

There is a good chance I will need to travel to London for autonomic testing. I cried with relief that finally, I could put a name to what I had. After a decade of tests and scans I had taken the reins myself and finally got my diagnosis with just two appointments.

The majority of doctors in Ireland are unfamiliar with EDS and there are no specialists available here in Ireland. If there were more awareness and training, I may have been diagnosed much earlier in my life. I was on a high the day I got my diagnosis, but the next I had to face the harsh reality that I have a rare, lifelong and progressive disease. Luckily, my EDS is quite mild in comparison to many of my peers and hopefully more awareness will mean better treatment for me, and my fellow zebras in years to come.

The biggest help for me through all of this has been the ‘EDS Awareness Ireland Support Group‘ and ‘Irish Dysautonomia Awareness’ on Facebook and speaking to other people with EDS and the secondary conditions that go with it. Both groups are enormously supportive and concerned. Many of them have EDS and Dysautonomia that affects them so much they are in and out of hospital. Yet, everybody is equal in the group and no matter how trivial I thought my problems were in comparison, the support has been immense.

Hopefully, together, we can raise awareness about this debilitating disease and bring about an improvement in the services available. For more information about Ehlers Danlos Syndrome, go to ‘EDS Awareness Ireland,’ on Facebook. Please also give ‘Irish Dysautonomia Awareness’ your support and like them on Facebook too. ;)