‘My girl’s chronically ill… but we can’t access treatment’ – Belfast Telegraph
A Co Armagh teenager’s life has been devastated by a horrific neurological conditi…….
A Co Armagh teenager’s life has been devastated by a horrific neurological condition which is so rare that there is no treatment in Northern Ireland.
t her worst, Erin Wall (14) can suffer paralysis for hours; lose the power to walk for days and the ability to speak and see due to Functional Neurological Disorder (FND).
The Portadown College pupil, who lives in Richhill, has spent the past few years undergoing countless medical tests but because FND is so rare there is no treatment path available to her.
For her distraught mum Ruth, it has been an agonising time, watching her daughter’s quality of life disappear with no hope of a care plan to manage her chronic symptoms.
Now mother and daughter are sharing details of their experience to help raise awareness of the condition and also put a spotlight on a new support group called FND Matters NI which aims to lobby for better medical care for patients.
And Erin, along with former classmates at Clounagh Junior High School in Portadown, have raised £3,600 to help the charity get up and running.
Erin admits: “It can be hard because I have good days and bad days but I’ve had it so long now I just get up and get on with it.
“I can’t do simple things anymore and being reliant on people around me is hard.
“The support group has been a relief because I did feel very isolated and alone and now being able to talk to others who understand what I am going through has been great.”
It is thought there are 1,500 people in Northern Ireland with FND.
It is a neurological disorder that affects how the brain and central nervous system send and receive signals.
While conditions such as Multiple Sclerosis and Parkinson’s disease leave discernible physical and neurological damage, with FND there is no structural damage or disease which makes it difficult to treat.
Symptoms can vary in frequency and severity and can include weakness, pain, tremors, non-epileptic seizures, headaches, slurred speech, blurred vision and blackouts to name only a few.
Erin struggles with most of these symptoms including fatigue, painful muscle spasms, blackout episodes, temporary paralysis and seizures.
She can spend several hours unconscious and be left paralysed afterwards, unable to walk or see.
The severity of her condition impacts on all her loved ones — sister Naomi (16), brother Lewis (11), dad Stevie (50), a project manager, and mum Ruth (46).
For Ruth, who is a director of her family business Craigavon Plastics Limited and has also just set up her own online gift shop Maggie K Gifts, leaving work to go to Erin when she …….
