My Journey With Scoliosis

Hi y'all, its Katie here back with another blog post! I've been wanting to write about my journey with scoliosis for a while now and I've finally gotten around to it. I'm splitting my story into two parts as it's pretty long! I hope y'all enjoy part one!

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When I was born I was almost immediately diagnosed with Neurofibromatosis Type 1 (NF1) as they already knew my older sister and dad had it, meaning it was very likely I would too. After being diagnosed I was monitored by a pediatrician in case we were to come along any complications due to the NF.

I was a healthy child until my scoliosis was discovered at the age of four, at the time it was moderate and just needing monitoring, where I was put under the care of Mr Nordeen at Royal National Orthopedic Hospital, Stanmore for the time being but by the time I reached five the curve had reached over 100°.

After the curve had reached this point Mr Nordeen acted quickly and I was fitted with spinal rods that would need to be lengthened every six or so months until the time came for me to have the spinal fusion. After almost every single one of these surgeries I'd have an infection or another complication, it never seemed to go the way we hoped.

When I had my fusion at around the age of ten in 2008, we finally thought that this was it. No more surgeries, no more infections or complications. But those thoughts were proved wrong when this fusion failed and the rods buckled. Within that year I went back under major surgery to have another spinal fusion.

Throughout all these surgeries I had a number of different back braces that were to be won for twenty three hours a day - the only time I was allowed to take it off was for a shower. At first it was extremely hard, having to get use to something supporting you, restricting movement, I became so use to them and relied on the, each time my surgeon decided it was time to take the brace away for the next surgery i'd cry, the support I had for so long was suddenly taken away.

Growing up this way was hard, especially when you sit and watch people do the things you could only imagine. On days out to places with rides, I'd get slightly hear broken - i'd watch my sister, cousins, go on these big rides while sat and watched on the side lines. But as I got older I grew use to it, my parents would buy me a new colouring book and pencils instead and maybe a small toy - for me this was the

When I had my second fusion, we were sure - even the surgeons, that this it. I've had the fusion, one that should work and I'd finally get to be like anyone else my age. best thing I could of had. As a child I was completely into art, so I was pretty content with that. During all the years of surgeries, infections etc. I grew to be quite poorly, I was severely under weight and had very little appetite, so much so that I became malnourished (more in part two!) and was diagnosed with chronic fatigue, as well as suffering with severe acid reflux problems and constant cluster migraines - which often hospitalized me.

Below are some photos I found on our computer of me growing up, and the changes in my back over the years. (the photo with the pink bottoms, 2nd left at the top is more recent!)

By the end of March 2011, when I was 12 my whole life changed completely and utterly - my famlies too. The start of a whole new battle arose.