Gabrielle deFiebre was in the mall to buy hiking boots with her grandmother in 2009 when she felt a pain surge from her neck down her arms.
An active final-year student at New College of Florida, she thought it was strange but assumed nothing of it.
She carried on walking, sporadically stretching and bending in a bid to ease her muscles.
But it just got worse.
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Gabrielle deFiebre was in the mall to buy hiking boots with her grandmother in 2009 when she felt a pain surge from her neck down her arms. It was her first symptom of transverse myelitis
Finally, lying in bed at home, she decided it was time to find a drop-in center online to get a professional opinion.
That was when her body displayed the first signs of a crippling polio-like illness known as transverse myelitis.
It is the same condition which has garnered attention this week, as the CDC reported there has been a surge in diagnoses this year.
Specifically, the ‘surge’ is in cases of Acute Flaccid Myelitis, a sub-type of the illness, which starts as a fever and can lead to paralysis.
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The term AFM was first coined in 2014 after a spate of pediatric cases – more than 100 of whom still haven’t recovered.
In light of the recent surge, doctors this week admitted we still know very little about the condition.
And Rebecca Whitney, program manager at the Transverse Myelitis Association, said they have seen an uptick in their membership – mainly bewildered parents seeking help after their children were diagnosed.
Gabrielle, now in her late 20s, is one of 100 patients who is sharing the story of her experience with the condition via the Transverse Myelitis Association’s website in a bid to shed light on how it impacts one’s life.
‘When I was a kid I used to do gymnastics. I was really active, adventurous,’ she explains in a video for the site.
‘When I was a kid I used to do gymnastics,’ Gabrielle (pictured as a child) explains
Gabrielle (pictured as a child) says the disease has changed everything but she isn’t giving up
In a frank blog post, she describes the harrowing first hours when the disease took hold of her body. She lost all sensation and even collapsed on her way to the hospital (pictured as a child)
Gabrielle is one of 100 patients who is sharing the story of her experience with the condition via the Transverse Myelitis Association
‘I miss that now, I miss jumping on the trampoline, running like I used to. Not feeling trapped.
‘My life with transverse myelitis changed everything.
‘I can’t get out of my chair and walk around, go for a hike.’
In a frank blog post, she describes the harrowing first hours when the disease took hold of her body.
‘I placed my right hand on my computer’s trackpad and realized I couldn’t move any of my fingers. I yelled to my grandmother “I can’t move my right hand!”,’ she writes.
‘I gathered my belongings and walked out of my grandmother’s condo and to the elevator. While waiting for the elevator I almost collapsed, and my legs continued to weaken as I walked from the elevator to the car. I dragged my legs into the car and we sped away to the Emergency Room.’
She couldn’t feel anything below her chest, and couldn’t move her triceps or her fingers on either side.
Scans revealed her spinal cord was inflamed.
Doctors tried everything.
They put her on a dose of steroids and gave her plasmapheresis, a therapy that separates blood plasma from cells to remove antibodies.
SURGE IN CASES OF TRANSVERSE MYELITIS SUB-TYPE
The CDC has issued a report warning there has been a surge in the number of children struck down by acute flaccid myelitis this year (figures from the report pictured)
A mysterious polio-like illness is sweeping the United States, sparking fears of a potential outbreak.
Acute flaccid myelitis, a fever which leads to paralysis in children, was first detected in 2014.
Scores of children were infected, and more than 100 of those hospitalized have yet to recover.
Now, the CDC has issued a report warning there has been a surge in the number of children struck down by AFM this year.
The way the figures are going, experts fear this outbreak could be worse than before.
But the medical community remains largely ignorant about what causes AFM and how to treat it.
‘You hate to be an alarmist, but there’s reason to have some concern,’ Dr Avindra Nath, chief of the section of infections of the nervous system at the National Institute of Neurological Disorders and Stroke, told The Washington Post.
‘What we don’t know is where are these cases. Are they clustered? Do they all look alike? Getting more information on these cases would be helpful.’
WHAT IS TRANSVERSE MYELITIS AND AFM?
The term ‘myelitis’ means inflammation of the spinal cord.
Transverse myelitis is the broad name of the disease, and there are various sub-types.
It is a neurological disorder which inflames the spinal cord across its width (‘transverse’), destroying the fatty substance that protects nerve cells.
That can lead to paralysis.
AFM is an unusual sub-type of transverse myelitis.
Patients starts with the same spinal inflammation, but their symptoms are different and the disease develops differently.
Primarily, AFM patients are weak and limp, while patients with general transverse myelitis tend to be rigid.
Most AFM patients start to struggle with movement of the limbs, face, tongue, and eyes.
They then begin to lose control of one limb or sometimes the whole body – though many maintain control of their sensory, bowel and bladder functions.
Unlike transverse myelitis, which has been around for years, doctors are still in the dark about why and how AFM manifests itself.
The technique is used to treat autoimmune conditions. But it does not combat transverse myelitis.
Over the next two weeks Gabrielle also required oxygen support and a pressure sore on her coccyx from constantly sitting upright.
She has continued to make progress since, regaining feeling and control in her triceps, left-hand fingers, and trunk.
However, she remains in a wheelchair.
‘Having hope is hard sometimes,’ Gabrielle says in the video.
‘Transverse myelitis, it has no cure, it can happen to anyone at any time. But I still do. I still have hope.
‘I hope that we can find a way to repair the damage that was done by transverse myelitis in the spinal cord so that I can do everything I used to, and get up out of my chair and walk around.’
- For more information about the condition, visit the Transverse Myelitis Association website