‘I am in pain ev­ery day and some­times it is al­most too much to bear’

Zon­dra Meaney lives with a rare ge­netic dis­or­der but thanks to the round-the­clock help of her mother Dorothy, she tries to make life as nor­mal as pos­si­ble for her son Car­rick

The Irish Times - Tuesday - Health - - Health Ehlers-danlos Syndrome - Ar­lene Har­ris

Dorothy Meaney has two grown-up chil­dren. While her son, Jonathon, lives and works in Spain, her daugh­ter Zon­dra lives at home and needs round-the-clock care, as she suf­fers from the de­bil­i­tat­ing con­di­tion Eh­lers-Dan­los Syn­drome (EDS).

The 32-year-old had health is­sues when she was grow­ing up, but was not di­ag­nosed with any­thing spe­cific. Then, af­ter leav­ing school, de­spite many puz­zling and de­bil­i­tat­ing ail­ments, she man­aged to at­tend col­lege. And, 10 years ago, she gave birth to her son, Car­rick.

How­ever, ill-health still ruled her life and, five years ago, doc­tors re­vealed she had a con­di­tion which af­fects just one in 5,000 peo­ple. Since then, her health has de­te­ri­o­rated and mum Dorothy, her full-time carer, says life can be tough.

“Zon­dra was born with a heart mur­mur and was al­ways back and forth to hospi­tal,” she re­calls. “Doc­tors also thought she had ‘click hips’, but even­tu­ally said it was noth­ing to worry about. How­ever, look­ing back, I think this was the first sign of prob­lems yet to come.

“She also suf­fered very badly with mi­graines and with her bow­els and stom­ach, which would cause her to scream with the pain. And over the years she had so many bro­ken and dis­lo­cated bones that I thought I would be re­ported to so­cial ser­vices.”

Black­outs

When Zon­dra was 14, she began to have black­outs and her mother was ad­vised this was due to panic at­tacks and she should carry a pa­per bag with her to help re­store calm breath­ing. She wasn’t con­vinced and con­tin­ued to look for an­swers to her daugh­ter’s ever-grow­ing list of is­sues.

“Life has not been easy for me over the years and most of it has been stolen by EDS,” says Zon­dra. “Over the years , I went to var­i­ous doc­tors, but was never given any ex­pla­na­tion as to what was wrong. So I car­ried on as nor­mally as pos­si­ble and af­ter school went on to study beauty ther­apy. But I didn’t have enough strength for the job as one day I col­lapsed at work and was rushed to hospi­tal, where it was de­cided that that I had a ‘mus­cle weak­ness’.

“I went on to study sci­ence which I re­ally loved and it was a bit eas­ier than the beauty ther­apy even though I was on my feet all day. But even that be­came too much for me and, at 25, I was di­ag­nosed with pos­tural tach­car­dia syn­drome (PoTS) which can cause ab­nor­mal in­crease in heart rate and re­sult in dizzi­ness and faint­ing. So we now had an ex­pla­na­tion for the black­outs, but were left won­der­ing why I had so many other prob­lems.

“A pri­vate rheuma­tol­o­gist [who she at­tended as there was a three-year wait on the pub­lic sys­tem] sug­gested I may have Eh­lers Dan­los Syn­drome. So, in 2014, we trav­elled to the St John and El­iz­a­beth Hospi­tal in Lon­don where I was of­fi­cially di­ag­nosed with EDS.”

EDS dif­fers from per­son to per­son and Zon­dra has prob­lems with her skin, joints, ten­dons, lig­a­ments, bow­els, stom­ach and blood ves­sels. She was also di­ag­nosed with Chiari Mal­for­ma­tion, which af­fects less than 20 per cent of EDS pa­tients and causes se­vere headaches and prob­lems with eye­sight and mus­cle strength.

The com­plex­ity of Zon­dra’s con­di­tion means she and her mother have to travel to Lon­don ev­ery three months to be seen by spe­cial­ists and re­ceive treat­ment to try and al­le­vi­ate the con­stant pain.

“I am in pain ev­ery day and some­times it is al­most too much to bear,” she says. “I spend a lot of my time in bed or in a wheel­chair and re­ally I couldn’t man­age at all with­out my mother. She does so much for me and Car­rick, and this al­lows me to have some time with him ev­ery day and be a reg­u­lar par­ent rather than a ‘sick’ one.

“She shields him from the worst of it, so I get to be up and on the sofa when he comes home from school and I can also do home­work with him and have din­ner. With­out my mother, I wouldn’t be able to cope at all as I am now com­pletely house­bound. I have lost so much – the per­son I was be­fore EDS, my ca­reer, my con­tact with the out­side world and my zest for life, but I am still de­ter­mined to keep go­ing and, thanks to her, I can stay some­what pos­i­tive.”

Car­ing for Zon­dra is no easy task, but her de­voted mother says it is her first pri­or­ity in life. “I never thought of my­self as a carer as I just do what I have to do,” says Dorothy. “My mind is al­ways on my daugh­ter and I feel no one can mind her like I do. The life of a carer can be lonely, be­cause some­times peo­ple find it hard to un­der­stand that I can’t just drop things and go out, as I can’t plan be­cause I never know what way Zon­dra will be. But Fam­ily Carer’s Ire­land is a huge sup­port to all car­ers – they fight our cor­ner for us when we prob­a­bly wouldn’t have the time or en­ergy to do it for our­selves.”

The Lim­er­ick wo­man says that de­spite the hard­ship, her daugh­ter is up­beat and gets great joy from both life and her beloved son – so she is also de­ter­mined to look on the bright side of life. “Zon­dra needs a lot of treat­ment [in­clud­ing surgery abroad on her skull which is be­com­ing dis­lo­cated from her neck] and thank­fully her friends have started to try and raise funds – as it is so ex­pen­sive [Zon­dra has a gofundme page]. She had a pul­monary em­bolism in Oc­to­ber on top of ev­ery­thing, but she still re­mains pos­i­tive and tries to carry on as nor­mally as pos­si­ble. Car­rick is her great­est joy and the rea­son she stays fight­ing no mat­ter what life throws at her.

‘Strong and pos­i­tive’ “I take care of ev­ery­thing for her, but although it’s tough, things are far, far worse for her. Nei­ther of us are liv­ing the life we en­vis­aged and some­times I wish things were dif­fer­ent, but when I see how strong and pos­i­tive my daugh­ter is, how can I be any dif­fer­ent?”

Natalie Mur­phy, founder of EDS Aware­ness Ire­land, ex­plains what the con­di­tion is and how it man­i­fests it­self. “The Eh­lers-Dan­los syn­dromes are a group of con­nec­tive tis­sue dis­or­ders which have 13 sub­types,” she says. “Con­nec­tive tis­sue is im­por­tant in the body as it is the ‘glue’ which holds or­gans, joints and blood ves­sels in place. In those with EDS, this glue is more like ‘chew­ing gum’, mak­ing the af­fected body sys­tems weak and stretchy.

“At this time, re­search sta­tis­tics show the to­tal preva­lence as one in 2,500 to one in 5,000 peo­ple, which means there could be up to 1,900 peo­ple in Ire­land af­fected. Many pa­tients live their lives with­out an­swers and suf­fer with the con­di­tion well into adult­hood be­fore the right clin­i­cian fi­nally puts all the pieces to­gether.

“The syn­dromes are also not cur­rently recog­nised on the long-term ill­ness scheme, though they are ge­netic and life­long. Many pa­tients are forced to travel to the UK, USA and var­i­ous other coun­tries pri­vately to at­tain di­ag­no­sis and treat­ment .”

‘‘ With­out my mother, I wouldn’t be able to cope at all as I am now com­pletely house­bound . . . . Thanks to her, I can stay some­what pos­i­tive

Dorothy Meaney with her daugh­ter Zon­dra and grand­son Car­rick.

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