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Fight rare neuro-immune disorders. Together.
Chelsey’s Transverse Myelitis journey has not taken a ‘typical’ path. So far we’ve been lucky she is fully mobile. For five months, Chelsey complained about her skin burning like bad sunburn, that it hurt to brush her hair or put sunscreen on. Her legs felt wobbly and she dragged her left leg when she was tired. She had terrible migraines. We took our 14-year-old daughter, Chelsey, to four different General Practitioners over five months to try find an answer, they couldn’t explain it. Perhaps she had shingles? They questioned all our mental health as we kept coming back again and again. Eventually one day her right hand suddenly became paralyzed at school, the 4th GP decided to do an MRI. The first two neurologists misdiagnosed her, and recommended no treatment but with extensive research via ‘Dr. Google’, obsessively pouring over Dr. Ben Greenberg’s university lectures until 2 am most nights, and learning all about the nervous system as well as support and advice from other TM parents via the numerous support groups, we eventually got her to the right neurologist and some vital steroids and IVIG treatment.
Chelsey has LETM and she’s also had a ‘confirmed by MRI’ reoccurrence of TM one year later. To me this seemed questionable, I had read that if she did have a true reoccurrence, then we needed to get her on a preventative therapy ASAP, this led us to our journey to the TMA family camp in the USA.
Although we’re very lucky in Australia to have a national health scheme paid for by our taxes, similar to Canada’s, it does not seem to practice preventative medicine like the USA does. Even if Neuromyelitis Optica or MS was suspected, we would have to wait for another attack or further deterioration to get preventative treatment approved. It seems short sighted that a national health system would wait for a patient to get worse, paralyzed, lose eyesight perhaps and need disability support before approving treatment, therefore costing all us taxpayers more in the long run.
Australia’s population is very small, about 23 million people, so the annual pool of TM diagnosis is a tiny number. It would be my wish that a gold standard for treatment be applied worldwide and that we’d be willing learn from ‘bigger’ countries, with more TM patients, and therefore more experience. It would be a dream for us Aussies, to raise enough funds to send an Australian neurology student to do an internship with Dr. Greenberg and have better collaboration between all the countries. We also plan to try to help raise awareness countrywide in ER wards, so if a person presents with TM, it’s recognized by a health worker and steroids are given quickly.
We are so grateful for the TMA, CCK, all the compassionate specialists who give up their precious time to be with the kids and families who support each other to get answers. We came away from the TMA annual quality of life family camp in Scottsville, KY camp with more questions regarding Chelsey’s health. The USA specialists raised the possibility of a spinal fistula, and recommended further investigation and the Australian specialists are disagreeing. We are still seeking a second opinion in Australia.
Gillian and Iain Bennett
In Chelsea’s words…
Less than two weeks before my 15th birthday I was diagnosed with Transverse Myelitis. I now had a name to go with the burning sensations; constrictions that left me gasping for breath; the aching in my head; hand paralysis and the tiredness that consumed every waking moment. Almost a year later, one month before my 16th birthday my neurologist explained that it was back again. I knew, of course.
The pain I had been feeling for the past eight months was recognizably the same as the year before. But it was almost impossible for me to have Recurrent Transverse Myelitis, so I had tried to ignore it. I remember punching a wall when I heard it was back. I was angry. Angry that it was back, angry with friends who told me I made it all up for attention, angry at the people who told me it was all in my head and finally angry at myself for not speaking up and telling everyone that the pain wasn’t imagined. Again, another year later, two months before my 17th birthday, my mum told me that we were going to travel from our home in Australia to North America, to a camp for kids like me. I was scared. I didn’t want to go, I felt stupid. I knew many others with neurological disorders weren’t as able bodied as I and here I was resentful about the fact that I had to drag my left leg around.
But when we arrived at the Centre for Courageous Kids, I realized that I was indeed a fool, not for the fact that I went, but for the fact that I almost didn’t. The others I met there had similar or far harder stories than mine and a boy in a wheelchair commented that I was brave. That first night I cried, not from pity for the others or myself. But from happiness that I was accepted. My friends at home never really understood but always cared. But these kids? Some kids who have never walked their entire lives told me that I was brave? They are the toughest, bravest and kindest kids, they understood my journey. They hugged me while saying I had been through so much. So I cried. And the counselors? Young adults in their 20’s? Helping us. Playing games with us. Talking to us. All whilst on their summer holidays. I can tell you that no matter what they say, a lot of young adults wouldn’t want to be helping kids with physical or mental problems during their summer break.
Every afternoon, the physicians invited by the TMA gave workshops on these neurological conditions and answered questions and they even reviewed my case. They gave my family help and advice that no one else could.
Thank you counselors, fellow campers, physicians and the TMA.
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