I Love Limerick’s Richard Lynch pictured with 2016 Carer of the Year Dorothy Meaney and Zondra Meaney. Picture: Dolf Patijn/ilovelimerick
Zondra Meaney and Ehlers Danlos Syndrome
Ringo Music Bingo and Quiz Night for Zondra Meaney’s Treatment Fund
By I Love Limerick Correspondent Jordan Mac Cormaic
A Ringo Music Bingo and Quiz Night for Zondra Meaney’s Treatment Fund will take place this Friday, July 28 at JJ Bowles Pub from 8 pm.
Zondra Meaney is a Limerick lady who has a very rare connective tissue disorder, Ehlers Danlos Syndrome (EDS). She also suffers from a number of secondary disorders, including Chiari Malformation, POTS, autonomic dysfunction and Myasthenia Gravis.
EDS is a rare connective tissue disorder which occurs in approximately 1 in 5,000 people. The condition can affect every system in the body leading to a wide range of apparently unconnected symptoms including joint pain and hypermobility, chronic fatigue, gastrointestinal issues and heart complications. Symptoms can vary from mild to life threatening.
Unfortunately, the Irish Health System and hospitals are not equipped to deal with the severity of the diagnosis. Most of these conditions could only be diagnosed in the UK by an EDS specialist as diagnostic testing was not available here in Ireland.
Due to these various conditions, she suffers from Tacs which are the most painful condition known to medical science. She is treated with up to 40 injections in her skull every 3 months. Her heart rate is also severely affected and is on a lot of medication to help control it.
Zondra’s mother and full-time carer Dorothy Meaney was awarded National Carer of the Year 2016 for the outstanding work she does to support and care for her daughter.
There is no specialist in Ireland and the Government will not cover anything on the treatment abroad as Zondra’s consultants work privately in hospitals in London. This does not meet the criteria for the treatment abroad scheme.
Zondra’s doctors in Ireland are fantastic and work very hard to help her but she needs the specialist care and would not have come as far as she has now without it.
As the Irish Government will not fund this treatment abroad, her family and friends have set up a donation page and have held many fundraisers to cover the inevitable medical expenses going forward.
Zondra said: “I can’t begin to describe how much the support of the Limerick people means to me and how it has helped me get me through a tough period in my life. I want to say thank you to all those people who are making a difference in the lives of my son and of myself. I am indebted always.”
Ringo Music Bingo is a game hosted by Ronan Leonard where he plays the intro to well-known songs, if the band is on your sheet then you cross them off, first to fill the sheet will win a prize. There will also be music from Zondra’s brother Johnny Meaney.
All are welcome on Friday night so please come out to JJ Bowles to have a great night and to support Zondra’s Treatment Fund.
To donate to Zondra’s Treatment Fund please click here
To visit the event page on Facebook click here
To read more Zondra Meaney stories on I Love Limerick click here