David Bowie Tribute Gig

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Thanks to John Steele and all involved for organising this years David Bowie Tribute Gig as a fundraising gig for both myself and Zondra Meaney (She is also from Limerick and also has Dysautonomia, EDS, and many serious secondary conditions) with all proceeds going towards each of our respectful Medical Funds.

It is on Friday the 10th of February in Dolans Wearhouse Limerick. Tickets are only €10 and can be purchased HERE, Last year this Bowie Gig sold out fast so be sure to get your Tickets early!

It has an excellent line up of local talent including: Falldogs, Shardbourne, Eammon Hehir, Parliament Square, Theme Tune Boy, Siobhan O’Brien, Ronan Mitchell (Foxjaw) The Alvin Purple Experience and The Brad Pitt Light Orchestra, to name just a few!

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To raise extra funds there are also beautiful posters designed by Ken Coleman especially for this night, They are size A3 on a matt card finish at a price of €20 each, there are only 50 made and a lot of them have been taken already so to be in with a chance to get yours put your name down HERE asap.

If you cant make the night but would perhaps like to find out more or donate to the funds separately you can do so at the links below:

Lette Moloney’s Go Fund Me

Zondra Meaney’s Go Fund Me

Alternatively, sharing this blog post to your friends would be hugely appreciated.

Thank you all and again to all involved,

Lette 🙂

Latest Fund Update – Jan 2016

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Please click on this image to be taken to the fund page – Thank You

GoFundMe Update
Posted: 19th Jan 

Happy New Year everyone! I am sorry that I haven’t updated in a while but I was pretty unwell over the holidays then life, the universe and everything got in the way since!

I have updated the blog with the most up to date hospital admissions, appointments and NEW NEWS about finally getting an appointment for the Harold’s Cross inpatient rehabilitative treatment, That had been recommended as part of one of my next medical treatment steps, by Prof. Grahame while I was over in London!

Read the blog update on: www.irishdysautonomia.wordpress.com

Harold’s cross starts on the 8th Feb. I will initially be admitted for a week where I will undergo an intensive daily schedule of Physio, Hydro and occupational Therapies along with pain and medication management to help me live and cope easier at home with these medical conditions that I have as well as making me more mobile and hopefully gets me out of the wheelchair for good!
I can go home Sat. And Sun. for a rest before being brought back up for another week if it is deemed necessary to continue. This treatment may continue for a number of weeks or months.

Once Harold’s cross is done for a few weeks, I hope to be well and strong enough to travel back to The Hypermobility Unit in London again for further diagnostic tests and to meet with specialist consultants who specialise in EDS, of which, there are none, in Ireland.

This time it has been recommended to me by my doctors here that I go meet with a Nurogasteroenterologist named Prof. Aziz who will be able to treat me in relation to my Gastroparises , Gallbladder and Slow Gut Motility problems, as the surgeon here has tried everything he knows but is lacking knowledge in relation to EDS in order to help me further.

My Pain Specialist Here has suggested I may need an ‘Upright MRI’ also to confirm or deny possible neck and head instability problems , as well as, possible Chiari Malformation.

It is more than likely a long shot but with the severe pain, migraines, Seizures, pins and needles , weakness and many other symptoms I present with, it is considered possible enough for me to get it checked as soon as I am able.

Again I would like to stress that, without this fund and all your help, my medical treatment and diagnostic tests would never happen as there is no specialist consultant or medical centre available anywhere in Ireland for EDS. People like myself, our only option is to travel. And the cost of everything medical abroad is impossibly and prohibitively expensive.

I want to take this opportunity once again to thank everyone who has helped out in this fund so far by Donating money or Donating your time in organising Fundraising events. I can’t thank you enough from the bottom of my heart.

Let’s hope 2016 brings good health to all of us 🙂

THANK YOU!
Lette xxx

*Please click on the image at the top of this post to go to the fund page
**Alternatively, you may click HERE 🙂

A Year Today!

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Can you believe it is a year today since I took my first trip over to London to meet with Prof. Rodney Grahame at the Hospital of St. John and St. Elizabeth?

While I was there, I had some tests and I received a confirmed diagnosis of EDS (Ehlers Danlos Syndrome) Hypermobility type with Gastro issues. You can read the full blog post I did about that experience Here.

The diagnosis and treatment plan I got there proved invaluable to me here in Ireland to help my Doctors treat me and even still, I am still waiting for my Harolds Cross appointment to help me get back walking!

I was due to go back over to London for further tests and much needed treatment but I have been too unwell and practically housbound when I am not in hospital over the past year to plan anything. I have been admitted to hospital 5 times since my visit over and I also have been diagnosed with Gastroparesis in that time.

However, things are getting worse especially in the Gastroparesis area of things and I still need to get back for the treatment as soon as I am well enough to travel and make plans.

The Medical fund is always open if anyone would still like to contribute or even just to share the link, I would greatly appreciate it, because without it, it would be impossible for me to pursue the correct course of treatment as there are no EDS specialists anywhere in Ireland and traveling abroad is not fully supported at all under the HSE travel abroad scheme.

I would just like to take this opportunity to say Thank you to everyone who has helped so far, to my family and friends and especially my amazing husband Keith. You have all been so supportive and helpful and I couldn’t have done it without you 🙂

Thank you,
Fainting Goat (Lette)

Heading back to London

Or at least that’s the plan!

I have my email sent for a new appointment to see Professor Qasim Aziz over in the Hypermobility Unit at the Hospital of St. Johns and St. Elizabeth. He is a Neuro Gastroenterologist who works alongside Prof Grahame, whom I have already seen. I’v been told by both Gastros I have seen on the 23rd of this month that going back to London is recommended as the best next course of action, to see specialists knowledgeable in conditions related to EDS.

So I have opened the fund again as this is the only way it is possible for me to get treatment abroad at the moment.

Even if you could share this link ( gofund.me/LetteEDS ), I would greatly appreciate any help and support, thank you and as always I will keep you updated with posts on how everything is going.

Thank you all once again.

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Got To London & Met Prof. Rodney Grahame

We were off to see the wizard, the wonderful wizard of… The Hospital of St. Johns and St. Elizabeth, in St. Johns Wood in London, Professor Rodney Grahame. Specialist Rheumatologist.

On a rainy Monday morning, August 25th, we rose early to catch our flight into Heathrow from Shannon, leaving Ireland at roughly 08:45am and Landing in England at about 10am.

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I had never been to England before so I was looking forward to the trip. After Landing, we caught the express train into the city where we could drop our things into the hotel, grab some food and gently meander around the locality. Though that didn’t last long, I was wrecked!

Considering I got no sleep the night before and had to be up at 5am to check into the airport I had to come back to the hotel for a while and take a nap before we were to meet with some friends for dinner that evening, the day had already caught up with me but the nap did me well and I went out and about where our friends showed us around some of the city (In the milling rain!) and took us out to dinner.

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It was the following day we were to meet the wizard and after a long and busy first day, we slept hard that night!

So, Up on the Tuesday, we strolled down to St. Pancras and Kings Cross Station where we grabbed a bite to eat and went for a walk afterwards to kill some time before the appointment. The time came and we took a Taxi to the hospital.

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Accessibility in London sucks… like really badly sucks, the Taxis and most busses are equipped to take individuals in wheelchairs but the city itself, the pavements are damaged and rough, few ramps, dangerous roads, unreliable traffic lights and most shops, cafes and places in general were stepped without lifts or alternatives for wheelies. The majority of the underground Tube stations were not accessible and Also, I hate to say it, but most people on the streets don’t care if you are in a chair or not, they will walk straight through you, in most cases. For such a big city it (Accessibility wise) was a bit of a disappointment.

IMG_1756I wasn’t sure of what to expect when I got to the hospital, but I wasn’t expecting what greeted us. A modern, beautiful building, all level access for chairs, open and bright and it even had a concierge beside reception, A CONCIERGE!! Seriously, inside the door ready to help! 😀 I was highly amused by that!!

ANYWAY!! Up to the 2nd floor we went where I checked in and was told wait in the waiting room. Before ten minutes passed, a door opened at the far end of the waiting room, and there stood a tiny, slightly frail looking man wearing a classy suit and a smile, It was the wizard, He called me in!

Prof. Rodney Graham welcomed Keith and I into his office where he did everything to make sure we were comfortable, even asking if the air conditioning was ok!!

I have to say he made an immediate impact as being a gentleman. I was only supposed to be booked in with him for an hour, he saw me for at least 1 hour 45 minutes.

He started by listening to my full medical, family and symptom history, taking notes as I spoke, stopping me briefly as I went to ask questions and clarify some things. He then went on to ask me a list of questions relating to family, symptoms, hospital visits, all my broken bones and injuries, asked about my pots and Gastro intestinal issues, everything! Then a physical exam where he measured my arm length, measured the curvature of my spine, did the Beighton Scale on me (The Beighton score is a simple system to quantify joint laxity and hypermobility) Checked each of my joints separately for hypermobility. Checked the elasticity of my skin, the blue in the whites of my eyes, checked my flat feet, the inside of my mouth for a high pallet and overcrowding, asking about anesthetic resistance which I have had at the dentist many times before. He asked me about cuts, bruises, bleeding, checked my blood pressure, height…

He went out of his way for a full hour and a half to rule out EDS of any type, then sat me down in front of him again, looked at me and said:
“You came here knowing what you had, you do know what you have, don’t you?”

I replied:
“I think so, but I need to hear it from you, Professor!”

He fully confirmed a diagnosis of EDS type 3 Hypermobility type, with gastro issues. Explaining to me in full how this is not a benign condition and that it needs treatment. He said he would write to each of my doctors and to me with a confirmed diagnosis, a full treatment plan and a recommendation for me to be referred to both a gastroenterologist and to  Harolds Cross in Dublin for intensive physiotherapy and rehabilitation to get me back on my feet.

He said we would wait and see how the Irish doctors and the HSE reacts to his letters and if nothing happens fast enough in the next few months he will recommend for me to come back over to his team for me to see Prof. Aziz (Neuro Gastroenterologist) and Prof. Mathias (Autonomic and Neurovascular specialist) for faster, although private treatment.

I also asked about the seizures and if Dysautonomia could cause them. He said he was not a neurologist but that people with EDS and Pots have had Non Epileptic seizures before, but he did not know if the seizures were caused by dysautonomia or something else, but that it has happened. He also agreed that it was most likely the medication that they were giving me to ‘treat’ the seizures, in fact, made it worse, giving that now I have stopped being prescribed these meds, I have had no more seizures.

I was delighted, It was so worth the money to fly over and meet him, even for the confirmed diagnosis itself. I haven’t received the letters as of yet but as soon as I do, I can presume my doctors will have gotten them too… I am very curious as to how they will react to what he has to say. Prof. Grahame is considered one of the worlds best Autonomic specialists, I would hope they listen to what he has to recommend for me and that treatment can finally get a proper run for its money! I would really love a chance at Harolds Cross for Rehabilitation. Anything to help me back on my feet again 🙂

IMG_1758We had one more day in London before flying home, we booked an extra day not knowing if Prof. Grahame would send me for some diagnostic tests or not but we had the day to ourselves.

A dear Irish friend of ours, now living in Stoke On Trent came down to London to meet up, it was the first time seeing her since Christmas and it was brilliant to catch up. We decided to go to the Natural History Museum to see the Dinosaurs and because it is free in! It was amazing! After a short wait in the queue to get in, the museum itself was fantastic. Not entirely accessible though, just be aware if you go there, not all areas can be accessed by wheelchairs but overall it is still definitely worth going to see and ended up being one of the highlights of the trip overall 🙂 Unfortunately we arrived on one of the last days that kids were off school, so the place was packed and the queue for the dinosaur area stretched the entire way across the museum, it would have taken well over an hour to get in and we decided not to wait, either way there was plenty for us to see, check out the photos I snapped on the phone! 🙂

IMG_1804After being about three hours at the National History Museum, we decided to head to Covent Garden where I picked up some pressies for the family and we caught a bite to eat, walked around for a bit and took in the sights and sounds before getting our friend back to Euston Station for her train back to Stoke on Trent, we said our goodbyes and Keith and I headed back to the hotel room, started to pack and prepare for the flight home the next day, then fell into bed.

The following morning we grabbed some breakfast and headed out to Heathrow, before long we were back on the plane home and it was all over. If I am to head back over which may very well be a possibility very soon, I will only stay for 1 or 2 nights as opposed to 3. London is expensive and you easily notice the extra day on your pocket just with eating and getting taxis alone But we didn’t know what to expect from our first trip and it was well worth going over to meet the man. I couldn’t have done it without the Medical Fund, and hopefully now treatment will get underway properly without any more doubts from the HSE.

My next appointment is on the 15th so I am interested to see how that goes and of course ill fill you in, so that is all for now, will leave you with some other shots from walking around London! Toodle pips! 🙂 🙂 🙂

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Quiz Nite in Aid of The Fund

Please click on the poster for more information.

Please click on the poster for more information.

 You can support Lette directly Here! Thank you 🙂

MRI, Pain Injections and London Update

Lette in the 1.5 Tesla MRI

Lette in the 1.5 Tesla MRI

Hi folks,

Just a quick update to let you all know that due to a hormone level increase in one area and some bizarre symptoms, the doctors had been worried about a pituitary adenoma in the brain. An MRI, paid for by the fund has been completed to rule out the possible Pituitary adenoma, and I am delighted to say, other than obvious signs of a history of bad ear trouble in my mastoid bones, it came out all clear. Thank you once again for your support, this test goes towards one of the tests I needed to have completed for my first trip to London in August 🙂

The first appointment with Prof. Rodney Graham at the Hypermobility unit in The Hospital of St. John and St. Elizabeth has been booked for the 26th of August and flights and accommodation have been purchased, again with thanks and help from the Go Fund Me fund, so I am all ready for the first trip over and I am looking forward to it now. I hope he can shed some light on things and my health can start to improve if at all possible.

Another treatment I have had in the mean time, this one just through the medical card, was steroid injections into my sacroiliac joint and right hip in Croom Hospital under Prof. Harmon. They hurt, I wont lie, but I have to say, after a few days of initial soreness from the injection sights, I have found an improvement in the pain. I hope with a continuation of these pain killing injections and the trip to London it may start me in the right direction to get my ass out of this wheelchair, but I won’t jump the gun just yet. The best things happen slow and steady.

All I can do for now is continue to hope and do my daily physio! 🙂

Thank you once again to everyone who has contributed and helped with the Go Fund Me campaign, I am overwhelmed with the level of support I have received so far. I cant thank you all enough.

Thanks also to Mark Griffin and Richard Lynch or organising a benefit Quiz night in Dolans Limerick on Thursday the 24th of July at 8pm, all welcome and all information on this event may be found HERE.