Rare Disease Day February 28

Rare Disease Day

Richard with Zondra’s mother, Dorothy Meaney, Laura Freeney, Anne McCarthy, Lucy Pratt and his friend Zondra Meaney who suffers from the rare disease Ehlers Danlos Syndrome (EDS). Picture: Dolf Patijn. 

Rare Disease Day on February 28 is a global event designed to raise awareness of rare diseases. Many groups are taking the opportunity to highlight inadequacies in the care of people with rare diseases in Ireland. One of these groups, Irish EDS and HMS, has called on the HSE to stop the neglect of thousands of people in Ireland with a rare condition called Ehlers Danlos Syndrome (EDS). HMS, or Hypermobility Syndromes, is an umbrella term for a group of potentially life-affecting medical conditions of hypermobility. One such condition, 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.

Limerick lady Zondra Meaney has Ehlers Danlos Syndrome and recently spent the last two weeks in hospital literally fighting for her life.  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. 

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.

Irish EDS and HMS committee member Karen Egan vehemently contests this assertion. ‘On many occasions doctors begin consultations by asking patients how to spell Ehlers Danlos Syndrome. That is a good indication of the level of knowledge we are dealing with in this country. A growing number of specialists are advising patients to travel abroad for treatment as they feel ill equipped to treat the complexity of EDS symptoms which can arise. It is not unheard of for patients to be told that the doctor does not feel comfortable treating them. Most people with EDS meet a very fractured and sometimes even unsafe level of care in this country’.

Karen appeals to the HSE to address the growing crisis for EDS sufferers in Ireland. ‘We need concerted efforts to educate the medical professionals in this country and also broader parameters in terms of eligibility for the Treatment Abroad Scheme for people with EDS in the absence of appropriate care and services here in Ireland. It is time to stop the neglect’.

For more information on EDS, see their site here and like their Facebook here.
To Zondra Meaneys Treatment Fund go HERE.

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