Zondra Meaney EDS Table Quiz Fundraiser

Wilde Night EDS Awareness Month 2016

Zondra Meaney EDS Table Quiz will take place this Thursday, January 28 in The Blind Pig at 7.30pm.Richard Lynch pictured with Zondra Meaney and her mother Dorothy. Picture: Dolf Patijn/ilovelimerick

A Zondra Meaney EDS Table Quiz will take place this Thursday, January 28 in The Blind Pig at 7.30pm. The event will be hosted by Ronan Leonard, there will be spot prizes galore and there will be music after the quiz by Ringo Music Bingo.

Limerick lady Zondra Meaney has Ehlers Danlos Syndrome and unfortunately here is no specialist for EDS in Ireland and no real treatment is available in this country for the condition other than pain management with morphine. For Zondra to have a chance at a normal life with her son, she will need specialist care and treatment in London where there is a specialist centre dedicated to the treatment and management of EDS. 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.

A huge deficit in expertise and resources in this country mean that an increasing number of people with EDS are forced to travel abroad for treatment. The majority of these people have no option but to raise funds themselves to cover the staggering amount of costs associated with accessing treatment abroad. In some cases, medical costs run into the tens of thousands. Life savings are haemorrhaged and many extremely sick people have to organise their own fundraisers. Disturbingly, nearly 50% of patients surveyed by Irish EDS and HMS stated that financial considerations prevented them pursuing necessary treatment abroad. Many EDS patients are struggling to hold down jobs, look after families and contribute meaningfully to society whilst simultaneously forging their own clinical pathways at great personal cost, both financially and in terms of their well-being. The HSE Treatment Abroad Scheme provides funding for patients to access medically necessary treatments abroad. However, EDS applicants are very frequently refused as they are informed that appropriate care treatment can be accessed in Ireland.

All are welcome on Thursday night so please come out and support Zondra! To donate to Zondra’s medical fund go to www.gofundme.com/60ban8

For more stories about Zondra Meaney click here.
To like Zondras Treatment Fund on Facebook click here.

You must be logged in to post a comment Login

X