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.
I will be flying out on Saturday the 13th of May early Morning and the appointment will be at 12:30pm in London. I am going, not only because I have been recommended by my doctors here, both in Cork and Limerick that I should go for advice and more targeted help by a professional who knows EDS but because of all the trouble I have been having with my gut related issues, by far my gut problems give me the most trouble and upset with almost constant pain, nausea, vomiting and weight loss as well as occasional swallowing problems and my already diagnosed Gut Dysmotility.
My Doctor in Cork is coordinating his treatment with Prof Aziz in London so I am having a Gastric Emptying Test on the Monday before I fly out which will help as one of the tests that needs to be done before going over. I have already had a Barium Swallow X-Ray done in February and thankfully that was all clear, so thats another test already down!
I am really hoping Aziz will help me out if he can, it would be great to finally get some sort of relief from all the symptoms. Even if he can get a treatment plan sorted that my Doctors here in both Cork and Limerick can do more needed tests and know what more to do with me, that would be a help in it's self but he may also want me to complete treatment or tests in the UK which I can't plan for until I know if that is even happening, so I will have to wait and see and I will keep you all posted as usual.
Keith, being my carer as well as my husband will obviously be going with me as there is no way I would be fit or healthy enough to do it all by myself.
Even as it is we have the flights over booked but won't be able to book accommodation or flights home until we know more from the appointment, as Prof. Aziz may need me to stay over for further tests etc. So we will leave that until the last minute when we know more.
That's kind of it for now until we fly over and it won't be long before we will be at the day, it's going to be a long day traveling for me and I am not the healthiest at the moment, I have had to cancel going to London from the last time until now as I wasn't strong enough to go for a long time, but I can't wait any longer and it must be done now. May was the closest appointment I could get so I took it.
I want to take this opportunity to thank everyone who fundraised and helped with my medical fund over the last while to help me get there, without you these trips wouldn't be possible and with no EDS specialists in Ireland, with I as well as others fast running out of any help, we have to travel for treatment and help as we are completely alone here, medically, in Ireland.
Thank you all once again and I will keep you updated on everything that happens.
Lette (Fainting Goat!) xxx
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!