“US Operation is My Only Hope of a Life Without Pain” from Ehlers-Danlos
Dismissed by the NHS, Nina now intends to raise £70k to have a life changing surgery at the CHIARI institute in the US. She says, “If I do not try to raise the money, then it is only a matter of a few years before my life will end.”
By ROB SMYTH
“As most people head towards their thirties, thoughts start to turn towards marriage, children and growing old. However, for Nina Parsons, she can only dream that these are the only worries that she has in her life.
The former make-up artist speaks to ROB SMYTH about the illness that can confine her to bed in constant pain – and has forced her to launch a desperate bid to raise £70,000 to fly to America for potentially life-altering treatment.
WHEN most people wake up first thing in the morning, they will no doubt be hit with feelings of tiredness as well as a jolt from everyday aches and pains.
For many, this quickly dissipates and they will get on with our daily lives but, for Nina Parsons, the pain she feels when she opens her eyes is one that consumes her entire life, every single day.
The photogenic former make-up artist, who lives in Elms Road, Stapenhill, suffers from Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that affects the collagen structure of the body.
It affects her from head to, and for most of the day, she is confined to her bed due to the agonising pain.
EDS affects one in 5,000 people in the UK and renders itself very differently in each individual
She and her family are now trying to raise £70,000 so that she can undergo a specialist fusion surgery that is only available in America. She says that this is the only chance she has of ever having any kind of normal life.
“Despite not knowing for years, I was actually born with EDS and lived with it my entire life,” Nina, 30, told the Mail.
“It meant for many of my early years I would bruise very easily, suffer dislocations and other injures that, at the time, went unexplained.
“It was when I hit the age of 23 that serious problems started to manifest and knew that I would have to seek out help and advice from doctors and consultants.
“However, my diagnosis was very vague and put my problems down to a range of issues from anxiety to psychological issues.
“I was offered counselling and anti-depressants at the time but knew that this would not solve the problem.
“I carried on as I was until I was around 26 when the situation became quite serious and I began to suffer from quite serious sickness and nausea.
“My weight dropped dramatically and my hair began to fall out as I could no longer eat solid food.
“Then, soon after, issues started to emerge regarding my movement, vision and then vertigo set in.”
Nina decided to carry on with her work as a make-up artist for brides but it was when she reached the age of 28 that her life and health took a dramatic turn for the worse.
“I fell down the stairs and suffered a whiplash injury to my neck. I also had major damage to ligaments and bones,” she added.
“I started to suffer excruciating migraines and constant headaches that have not stopped since.
“This was when I was formally diagnosed with EDS.
“My lust for life has drained from me. As a young confident woman in her twenties, I had built a successful beauty business that was going from strength to strength but I was unable to sustain the rigorous demands required to run a business and had to let it go.
“This in turn also meant the loss of my home and my livelihood.
“I was engaged for two years but the relationship also succumbed to the stress and demands of my illness and we separated.
“I am now all but housebound and live with my hugely supportive parents.
“Even within a home environment it is almost impossible to undertake or do day-to-day tasks most of us take for granted.
“This is due to almost 24 hour pain, severe migraines, neurological problems, not being able to focus or move my eyes, numbness, weakness, pain that radiates from behinds my eyes and the back of the skul , from my neck into my shoulders and arms and further down my spine.
“To compound the problem, my solace from pain relief is compromised as I have a an allergic reaction to morphine and many opiates. My body is slowly closing down and many of my waking hours I am confined to my bed.”
Nina was left shell shocked by the diagnoses and pain and suffering that came with it but she was defiant that she would beat this problem, only to learn that salvation would be hard to come by.
She said: “The treatment I need to make me better is not available in this country, the skills are just not there.
“It means that the only way of me ever having any kind of normal life is raising £70,000 to pay for a trip to America for an operation. It really is my last and only chance.
“I dream of raising enough funds to go through with and getting my life back and waking up without any pain.
“This would be major surgery and risks are attached but it has a 95 per cent success rate and I think it worth the risk.
“What I have and the pain I suffer is similar to what people suffer when they have injured their body following a major car crash.”
Nina is now focused on raising the money needed to get the operation needed to help her but is also interested in raising the profile of people with EDS.
“This needs to happen sooner rather than later as I am constantly bed ridden and I am in so much pain.
“But I also want to raise awareness of the droves of people with EDS in this country and making sure that this is an issue that is recognised by the NHS and help is easier to come by.
“If I do not get this treatment it will just gets worse and worse and I will be locked in agonising pain in my own body for the rest of my life.”
To find out more about Nina, or to donate to her fund-raising drive, head online to www.ninasccibattle.co.uk
Factfile: the effects of EDS
THE nature of EDS frequently leads to other related illnesses such as Postural Orthostatic Tachycardia Syndrome (POTS) and Craniocervical Instability (CCI).
Nina said: “ CCI manifestations are complex, it is often described as ‘pumpkin on a tooth pick syndrome.’
“Put simply, my ligaments do not support my spine, my spine moves, my head slides and wobbles and my brainstem is stretched and compressed and is causing catastrophic damage to my body.
“Each movement I make causes more and more damage, resulting in more impairment and generating more disabilities.
“I wear a cervical collar a large proportion of the time to enforce restricted movements.
“Sudden movement and over stressing my ligaments and joints could be catastrophic.
“The long-term prognosis is deterioration resulting in seizures drop attacks and eventually paralysis.
“The smallest journey is living hell, inflicting vibration and jarring to my body, so even hospital appointments are huge pain filled ordeals.”
factfile: How the surgery could help
CCI surgery is performed by a team of neurosurgeon in America. Each patient’s anatomy is unique, so each surgery requires extensive, pre-planned imaging and bioengineering analysis to determine the patient’s operative stabilization and fixation.
Days before the surgery, the patient goes through several hours of advanced dynamic MRI.
This pinpoints the location of millimeter-thin compressions that are causing brain and spinal cord symptoms.
The surgery itself is very delicate, typically taking five to six hours. After the patient undergoes general anesthesia, the surgical team makes one opening, approximately 10-15 inches in length from the top of the head to the back of the neck.
As the surgical field is highly trafficked with vertebral arteries and veins, the brainstem and critical cranial nerves, each step in the realignment of bones, the remodeling of angles and in the relief of compression points requires exquisite surgical precision.”
Postoperative recovery in the hospital takes 4-5 days, followed by rehabilitation and a gradual return to normal activities.
Many with EDS are trying to find pain relief in different ways. For some, surgery can help.
To help Nina’s charity, click here.
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