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At the age of 28, in 2011, Lette was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and NCS (NeuroCardiogenic Syncope – with Respiratory Arrest) . In the past 4 years since, she has also been diagnosed with EDS (Ehlers Danlos Syndrome) , Gastroparesis 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 17 minutes, she started to experience recurring seizures, Ended up in the HDU & 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. In 2015 she was rushed into resus and in turn admitted to hospital many times due to seizures and also admitted many times due to Gallbladder and Gut Dysmotility related issues.
The health system’s slow pace means Lette must wait months to begin investigations to rule out any further serious complications.
We decided to ask for your help because, over the past 3 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 is simply unavailable in Ireland.
Your assistance has already allowed Lette to travel for an initial assessment in London with Prof. Rodney Graham in September 2014, who confirmed a diagnosis of EDS HypermobilityType. Also a second trip over in March 2017 to meet with Prof. Qasim Aziz a Neurogastroenterologist who recommended treatment for the many gastro problems that Lette suffers from.
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.