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Laura (24) kept alive by feeding tubes, 30 tablets a day and living in a special sterile bedroom

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Lauren Walsh, aged 24, pictured bedroom in Passage West, Cork. Lauren suffers from Ehlers Danlos Syndrome

Lauren Walsh, aged 24, pictured bedroom in Passage West, Cork. Lauren suffers from Ehlers Danlos Syndrome

Lauren Walsh, aged 24, pictured bedroom in Passage West, Cork. Lauren suffers from Ehlers Danlos Syndrome

THIS young Irish woman is kept alive by feeding tubes, 30 tablets a day and living in a special sterile bedroom.

Lauren Walsh (24) wants greater support for those with the debilitating Ehlers Danlos Syndrome (EDS) after the condition dramatically changed her life.

Lauren was just 15 when she was diagnosed with EDS after her weight had plummeted from nine stone to just five stone in the space of just a couple of weeks.

diagnosed

At first, doctors thought Lauren might have caught a virus but then she was diagnosed with EDS, which is notoriously difficult to treat.

The disorder results in critical parts of the body being attacked - in Lauren's case, it was her stomach and bowel.

There is no specialised EDS treatment facility in Ireland and Lauren was referred from Cork University Hospital (CUH) to a top UK clinic which specialises in the condition and its treatment.

Lauren was admitted to St Mark's Hospital in Middlesex but, sadly, her family's hopes for a life-changing transplant operation were dashed last year.

The Renal Failure Unit (RFU) of St Mark's assessed that Lauren wasn't suitable for a bowel transplant operation given the unacceptably high chance that she might not survive the complex procedure.

Lauren now has a regime which sees her take 30 tablets a day and she spends over 14 hours every day in a special sterile bedroom which protects her from infection.

The young Passage West woman is now dependent on a feeding tube which was inserted by CUH in her arm.

Lauren's mother, Callie, said her daughter was left shattered by the news she could not receive a bowel transplant.

"We had all hoped that this would provide the means for her to live a relatively normal life and that she could finally give up the intravenous feeds at night," she explained.

"Lauren is a great girl, an inspiration to everyone and a real fighter so hopefully the spirit which has seen her through all those terrible years will now help get her through this."

heartache

Lauren has also suffered the heartache of contracting a secondary condition called ARCS which has dramatically complicated her ongoing treatment.

ARCS has left her with dramatically reduced heat and cold sensitivity on her skin, leaving her vulnerable to burns.

Lauren's lifeline is now her iPad and her daily EDS journey blogs on her Facebook page where she posts regular updates. The young woman has 2,700 blog followers.

Lauren's Facebook page is 'Stripes For Life - My EDS Journey' and a support fund has been set up in AIB A/C No. 50281188 Sort Code 93-43-48.

hnews@herald.ie


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