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.
- Zondra Meaney
- Sarah Lyons
- Sofian Tlili
- Parag Deshpande