Lette's Medical Treatment Fund
At the age of 28, Lette was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (NeuroCardiogenic Syncope - with Respiratory Arrest) . In the past 5 years she was also diagnosed with EDS (Ehlers Danlos Syndrome) , Gut Dysmotility and a Seizure Disorder.
In 2013 Lette's hips failed. She now uses a wheelchair. In May 2014 after a syncope and respiratory arrest, where she needed rescue-breathing for over 17 minutes, she started to experience recurring seizures, Ended up in the HDU and ICU and has been in and out of hospital many times since. In December 2014 she was admitted to hospital once again and diagnosed with Gallbladder and Gut Dysmotility with other Gastro related problems whereby She may need a Bowel or Gastric Pacemaker and this is currently under investigation allong with other operations to help.
Throughout 2015 & 2016 she continued to be very unwell and was admitted to hospital 9 times.
The health system’s slow pace means Lette must wait months to begin specific medical investigations to rule out any further serious complications.
We decided to ask for your help because, over the past 5 years Lette's health has seriously deteriorated. These conditions are very rare, and treatment is complicated by a lack of understanding by healthcare professionals. Specialist treatment for these conditions is simply unavailable in Ireland.
Your assistance has already allowed Lette to pay for many tests and investigations as well as travel for an initial assessment and tests in London with Prof. Rodney Graham , who confirmed a diagnosis of EDS Type 3 with Gastro issues where he advised to get back over ASAP for Gastro tests with a Nurogastroenterologist who specialises in EDS. We are currently waiting on this new appointment.
We hope to continue fundraising to allow for follow-up treatment sessions with Prof. Graham and to meet with 2 more specialist consultants in London about her rare medical complications. It will provide for diagnostic and clinical examinations, treatments, scans, and associated expenses to discover a course of treatment for her condition, allow her to promptly rule out any high-risk complications, and most importantly to hopefully improve her quality of life.
We deeply appreciate any contribution that you can make, or awareness you can spread, to help Lette get access to the treatment that she needs.
Tickets are just €10 and there are some fantastic acts, please share or if you feel like coming on down for a great gig, you're more than welcome! :)
A Massive Thank You to all involved and to all who contribute :)
In other news, sorry for the long hiatus, I have been very up and down with my health recently and have been in hospital a few times in recent months with continuing problems with my GI Issues and I am now waiting on news of an operation to hopefully help that. I also have my referral in to the EDS GI specialist over in London so just waiting on that appointment now. I will be updating shortly on my blog all about that. Stay Tuned!! :)
Part 1 may be seen here: https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/
And Part 2: https://irishdysautonomia.wordpress.com/2016/04/13/the-good-the-bad-and-the-emergency-part-2/
Thank you as always for taking the time to read.
Please never hesitate to get in touch if you are interested in helping out with fundraisers or anything else to help me get back to London for treatment and a massive thank you to all who have helped already, I deeply appreciate it. I couldn't do any of this without all of your help!
I had another seizure in the ambulance on the way and continued to seize in the resus room for a while after where they fought to get my stats under control.
I had a tough couple of days and of course, as as result, was physically unable to continue my treatment in Harold's Cross which has left me terribly disappointed as I found it to be excellent but it may have been a little too much for me too soon.
For now, I need time to recover but once I am able, I will write up a full and detailed blog post about everything to fill you all in.
I am aiming to get back over to London in April for further consultations, tests and treatment that I am unable to get here because there are absolutely no EDS specialists anywhere in Ireland besides a few doctors in the HSE who may have a very basic, knowledge.
Any and all help, as always, is hugely appreciated and I couldn't get any of this specialist treatment in London, that is very much needed to try and improve my quality of life, only for your very generous help.
I would like to take this opportunity to thank everyone in Harold's Cross who were directly involved in my overall care while I was there.
The head of my team was consultant Prof. Veale and his reg doctors but I must especially thank the ward staff, of The Sacred Heart Ward, the nurses, physios, occupational therapists, Rian the therapy dog and all who I met in between as part of my care there.
I can not commend enough, the level of professionalism, friendliness and genuine care from all staff involved. I found the experience amazing and I only hope I can come back again when I am more able for it. I cannot recommend the place highly enough! An absolutely fabulous resource.
As always, I must thank the most important person in my life, Keith. Thank you for your unyielding love and support but most importantly your patience with all of this and what life has dealt us in the last number of years with this illness. It hasn't been easy and the amount of pressure you are sometimes under doesn't go unnoticed and I am sorry my health took this unforeseen turn for us. I could not ask for a more wonderful, loving and caring person in my life. My partner in crime! My very best friend. I deeply love and appreciate you more than I can ever express. Thank you from the very bottom of my heart for all that you do.
Please bear with me folks while I take sometime to recover and I will do a full blog post about everything as soon as I can.
Thank you dearly for taking the time to read and for all your valued support, Lette. Xxx