Monday 16 July 2018

'Nurses become distressed when seeing the severity of her wounds' - mum tells of daughter's cruel disease

20-month-old Alana suffers from the genetic skin condition called epidermolysis bullosa (EB).
20-month-old Alana suffers from the genetic skin condition called epidermolysis bullosa (EB).
20-month-old Alana suffers from the genetic skin condition called epidermolysis bullosa (EB).
20-month-old Alana suffers from the genetic skin condition called epidermolysis bullosa (EB).

Ian Begley

A mother whose daughter has a rare and painful skin disease described how local nurses become distressed when seeing the severity of her wounds.

Cork parent Rachel Reid's 20-month-old daughter Alana suffers from the genetic skin condition called epidermolysis bullosa (EB), also known as butterfly skin.

There is no cure for EB, and the only form of treatment is constant, painful bandaging of the skin.

Speaking to the Irish Independent, Ms Reid said that there are no nurses in her locality trained to treat her.

"Alana is the only EB patient in our area and we are very much left to our own devices," she said.

"We have had nurses who have buckled from the experience, but we have no choice, we have to do it.

"There is nothing normal about pinning your baby down while she screams in pain as you pop blisters with needles and wrap her whole body in bandages. 

"There are days she stares me dead in the eyes screaming, begging me to make it stop but we have to keep going, reminding yourself that one day she will understand why we are doing this," she said. 

Ms Reid and her husband Greg now have a carer to help them with the grueling process. 

"It takes the three of us and three hours to do it. There are days Alana is screaming so much that we have all been in tears," she said.

With little medical support, the mother of two regularly has to email photographs of her daughter's wounds to Crumlin Children's Hospital for advice. 

"Having someone who is trained in all matters EB would eliminate these stressful and dangerous situations. 

"An outreach nurse for Alana could mean the difference between life or death," she said. 

Ms Reid and her husband even had to give up their full-time careers to look after their daughter. 

"Most nights we are lucky to get a 2/3 hours of unbroken sleep, sometimes it's just minutes. 

"Even when she sleeps we have to do physio on her hands to make sure her fingers don't fuse together - it's too painful to do while she's awake."

Ms Reid spoke with Oireachtas representatives in Dublin yesterday, describing her daughter's situation and the essential need for more EB trained nurses. 

The delegation included representatives from Debra Ireland, the charity that provides hope and support for the 300 people in Ireland living with EB.

This week (Oct 23-29) is National EB Awareness Week and Debra Ireland is trying to fight the non-curable disease by creating a butterfly effect on social media to raise both funds and awareness.

Text BUTTERFLY to 50300 to donate €4 to Debra Ireland.

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