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My family and I have made this campaign in the hopes of not only receiving support but to also gain awareness for a supposedly "rare" disease. Since I was diagnosed, I have gotten in touch with patients from all over the world who have the same condition, and most people are misdiagnosed, or their symptoms are disregarded for years (as was my case). Creating awareness is so important to help others recognize signs and get proper treatment in time. Thank you for checking out my campaign, and I would be so grateful for your contribution!
Have you ever heard of Arnold Chiari Syndrome and Syringomyelia?
Probably not; I had no idea what it was until I was diagnosed in 2016!
In my best efforts to sum it up, I have a malformation in the base of my skull that compresses my cerebellum and medulla. As a result, cerebral fluid is trapped inside my spinal cord, which is slowly killing off nerves that are vital for my organs and extremities to function properly.
What are the symptoms and repercussions?
The most severe outcome is tetraplegia. There are many symptoms, but some are chronic neck and back pain, loss of muscle strength, vertigo, migraines, partial or total paralysis of my arms, legs and torso. At the moment, I have already lost sensitivity to heat or cold (I can burn myself easily), am losing reflexes in my arms and legs, motor control and strength, and I live in constant neck and back pain, let alone face annoying headaches. Surgery needs to be done as soon as possible to prevent my symptoms from getting worse before it is too late.
Is there a cure or treatment?
Apparently, there is no cure. However, its progression can be controlled or even reversed through a surgery that consists of cutting the Filum Terminale - a ligament that connects the spinal cord and spine.
The CHIARI Institute located in Barcelona is the pioneer of this minimally invasive surgical procedure. I went to Spain in May with my parents for a consultation, and fortunately, their surgical team confirmed that I am a candidate for treatment! The cost of the surgery abroad is very expensive (approx $44,000), however, I have been lucky enough to find a neurosurgeon in Brazil who is offering the same treatment. Unfortunately, this surgery is not offered in Canada.
The second and most common treatment in attempts to control the disease is decompressive craniectomy brain surgery. I faced this high-risk and extremely painful surgery in 2016, but unfortunately, my symptoms have continued to progress.
For more information on Chiari and Syringomyelia and its treatment, click here:
https://institutchiaribcn.com/en/diseases-we-treat/syringomyelia/
https://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/
https://www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/syc-20354771
Testimonials from patients who have had their surgeries done:
https://institutchiaribcn.com/en/arnold-chiari-testimonials/
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