Hi, I am Lette and I have EDS, Pots, Gut Dysmotility, Neurogenic Bladder Dysfunction, Severe hearing loss and a host of secondary complications to all of these. I will try and keep this as concise as possible but I feel it is still going to be a long post, please bear with me!
It all started on a Tuesday morning in April 2011. After a lifetime of silly ‘Mickey Mouse’ symptoms that didn’t lead to anything conclusive, I just thought I was feeling a little under the weather.
I got up to shower and get ready for work and as I was coming out of the toilet, I suddenly felt really weak, faint and overwhelmingly dizzy. I called out to my husband who got to me just as I lost consciousness and he caught me before I hit the ground.
We didnt know what was going on, My husband was brilliant trying not to panic but everytime I would come around and try to stand I would lose consciousness again!
He got me to lay on the bed while he called the doctor and got advise to either immediately call an ambulance or get me to A&E straight away.
We opted not to wait for an ambulance as it would be faster to drive me directly to the A&E.
Long story short I ended up staying nearly a month in the hospital under an initial doctor who tried some tests but ultimately seemed to be very dismissive of me and in the end told me to get up out of bed and just ‘walk it off, and you’ll be grand’, great advice to give to someone who was shortly thereafter diagnosed with, ‘a very impressive case of Pots’, after this we had to demand a second opinion knowing something was seriously wrong with me. I couldn’t sit or stand upright without losing consciousness and I was just told to walk it off?!
Needless to say the second opinion doctor took my case very seriously, did many more tests, one of which was a Tilt Table Test and we discovered that I did indeed have Pots and NCS (Neurocardiogenic Syncope) but the cause was unknown. I was medicated heavily for my issues (very low BP, High HR, Nausea, Joint pain, Sweating, Syncope sometimes with respiratory arrest (without breathing), given some lifestyle advice like eat more salt and drink plenty of black coffee to raise blood pressure and sent on my way.
The following months after my Pots diagnosis I was continuously being admitted into hospital and fighting to find a cause for the Dysautonomia, In October 2012 I was diagnosed by a Reumatologist in Cork that I had Ehlers Danlos Syndrome Type 3, Hypermobility Type, which in turn would be the organic cause of the Pots.
My symptoms at the time were progressively getting worse, I was fainting very regularly throughout the day sometimes without breathing which in the worst of cases led to new seizure type activity and short term paralysis in my legs causing long lasting neuropathy. I was getting severe headaches and excruciating pains in my joints, very low BP, High HR, Dizziness, easy bruising, Blue Sclera, Excessive Fatigue, severe nausea and vomiting with gut related pain.
This happened for months off and on without any reprieve until April 2013 where I slowly improved at the start of the year, well enough where I decided to go back to work for Apple Computers from home.
Everything was going amazing until my Pots started acting up, sometimes I had to put people on hold as I hacked into a bucket! The pain in my pelvis, hips and lower limbs became so much worse that crutches no longer supported me well enough.
By August I was in a wheelchair, In September I was admitted to hospital for 11 days for investigations and pain management. The specialist advised that I didn’t return to work.
Things went downhill fast with my health and I soon learned that I would have to fight the HSE with some of my issues. I had to do my own phone calls to start Physio and Occupational therapy as nothing was being done from the hospital side. My Consultant who looked after me for Pots also had some problem with the diagnosis of EDS that I got in Cork, they never took it seriously and tried to convince me that I didn’t have EDS but I only had ‘Benign Hypermobility’, which they said would have no bearing at all on my health or any of my issues!
In July and August 2014 I was at my worst health wise. I was admitted to hospital after being rushed into Resus via ambulance after having a very long seizure. I was admitted again for nearly a month where I ended up in ICU and HDU (High Dependency Unit) because of these seizures. The consultants sent me to Beaumont Hospital in Dublin via ambulance again to rule out Epilepsy of which all was clear thankfully and they put the prolonged seizures down to a major reaction I was having to the antiepileptic drugs they had me on to manage them, I was promptly taken off these drugs and in turn the seizures stopped almost immediately. It looked like the first ever seizure I had may have been a once off dysautonomic seizure caused by lack of oxygen and it was the antiepileptic drugs they had me on that made matters worse.
It was during this time that I decided something had to be done to try and help myself. There are no EDS specialists anywhere in Ireland and the closest place there were any was in London. I started a GoFundMe campaign and slowly raised enough to go to London and meet a Professor in rheumatology who specialised in EDS to get a proper diagnosis that would confirm to my consultants (and myself) that I did in fact have EDS and to get some sort of treatment plan that my consultants here could work off. This trip was a success. I met Prof. Rodney Grahame, got an official diagnosis, a treatment plan for my consultants at home and it was only after I got my letter from Prof. Grahame that my consultants started taking my diagnosis seriously and actually followed the advice given on the treatment plan.
Things started running smoothly for a while with my treatment, I was getting regular physio and occupational therapy, regular pain management and outpatient appointments to keep an eye on everything.
Slowly though, in 2015 things went downhill again and I started having severe gut related trouble. Over the course of the following couple of years I was in and out of hospital constantly, I lost a huge amount of weight, couldn’t eat anything without nausea or vomiting, got extremely weak and fatigued and my seizures returned after a year of being dormant, my consultant at the time wanted to operate on my gallbladder thinking that may be the problem with my gut. Other than that, he admitted to me outright that he didn’t know what to do or how else to help me and advised I seek help elsewhere if I knew where to look.
In 2017 I had to fundraise again to return to London to meet another Professor who specialised in EDS and Gastroenterology, Prof. Aziz. Thankfully since this consultation in London and following the advice he gave me I have improved greatly, with regards to my gut trouble at least.
I still get serious symptoms and there is no cure for EDS. There are no EDS specialists in Ireland and it is clear from my, and others diagnosis stories that there is little help within the health system in Ireland. We are already fighting illness, we should not have to also fight the health system for treatment that should be readily available here and we should not need to travel or worry about organising funds to do so when we are in this state and yet, we need to or we will just be forgotten about.
I worry that my symptoms will continue to flare and get worse as time goes on. I worry something serious may happen and that the doctors here may not be able to help me or others in this situation if that happens. My story had some major up’s and down’s and yet I am not the worst I have heard. There are others out there that have had much worse experiences than I have.
We seriously need an EDS specialist here in Ireland to help us. I am forever surprised by the constant stories I hear of peoples GP’s and hospital consultants not knowing what EDS is. It is 2018, is it really that far fetched to imagine having a consultant here that specialises in EDS or at least some training for our doctors? I think not! #EDS4IRE
Terrifying that there is no one in Ireland to help especially in a time of covid
There are probably not enough people with it for big pharma to be interested in doing research. These are the weaknesses of a government led economy. I think there is not enough known about Pots either and whether you are at risk of a worse covid outcome as definitely feel lu
It affects lung capacity