Tilly’s Story

Posted by lisa on March 03, 2015 in Uncategorized tagged with
5324_10201806163780123_8624005_nThis is Tilly’s Story as told to members of the Association at the last Get-together held at Guildford.Hello my name is Tilly Winson, I’m a proud Perthes child ! I would like to tell you about my journey through Perthes disease. I am currently twelve and half years old and am at the final stages of my journey with bi-lateral Perthes disease which we had never heard of before, so mum found Perthes Association on the Internet which has been very useful.When I was five years old I began to limp and suffered a lot of pain. My mum and dad took me to the doctors who sent me to hospital where I was diagnosed with Perthes in my right hip.

My consultant has always been very nice to me besides stopping me from running, hopping, jumping and my favourite… P E, well I was allowed to do some things in P E though it’s not the same as watching your friends doing skipping or football while you just time keep. My infant and Junior schools have been very supportive, we even played some P E games where we all had to sit on chairs and play hand ball. I had to see a physio regularly so they gave me a special buggy to use.

When I was six my buggy was swapped for a wheelchair just after my first surgery, this was an arthrogram where they put dye into your hip to see it properly and due to the poor shape of my femoral head they decided to give me a shelf operation. They took a shaving of bone from my pelvis and placed it into the top of my hip socket to lower the risk of dislocation. I spent 5 days in hospital recovering but shouldn’t complain as I got entertained by an entertainer that was being interviewed and filmed on Anglia news. So whilst I was in hospital I ended up on the news with my family and got lots of presents.

I even took part in the carnival in my wheelchair, dressed up as a hippy with my wheelchair covered in flowers. It was lots of fun!

I feel my recovery went really well, I was a bit naughty too as I wasn’t allowed to put my foot onto the floor so I had an awesome zimmer frame.

By being naughty I mean I would sneak outside and jump on the trampoline with my zimmer frame, on one leg. I’m surprised my mum didn’t have a heart attack. I wasn’t or shall I say even now I will never let an operation or the recovery period stop me doing anything.

When I managed to get back to normal activities I got very excited as I was allowed to do my first ever sports day. I had so much fun even though I was scared with everyone cheering as they knew it was my first sports day.

After a while I had more pain and stiffness and was diagnosed with Perthes in my left hip, I wasn’t very happy about it especially when I was told I would need the same operation but on my left hip. I actually

said “here we go again’. This time I recovered much more quickly and didn’t attempt the trampoline… I also got lots more presents!

After a couple of months I still had pain and stiffness and my surgeon thought it might be because my muscles were weak, she referred me on to another surgeon who was more experienced with Perthes.

In 2011 I had an MRI scan and the results were not quite what we were hoping for. Things just got worse I had a lot more pain than usual and in March 2012 I had bi-lateral arthrograms with steroid injections. The aim was to have a closer investigation of the blood flow, hip rotation etc., also to help with inflammation and to find out why I was still in pain. I also got lots of presents. The results showed that I had restricted flow around the hip socket and poor rotation, instead of being a “ball” shape my femoral head was more like a “flat egg”. This meant the femoral head didn’t fit in the socket properly. I was then referred to the Nuffield for more tests.

When I was eleven years old, I had a femoral osteotomy, this involved

cutting through my thigh bone and repositioning the femur using a metal plate. The recovery for this was awful; my epidural didn’t work, so I got put on morphine to take away the pain. The morphine made me feel away with the fairies – that was a funny experience. I was permanently tired, with my eyes as black as charcoal, six days later I was sent home with my wheelie wheelchair and crazy crutches. I left with lots of presents!

The surgery went really well as I got more movement and best of all no pain.

A year later, October last year, I had the same surgery done to my right leg, this time I had the surgery on Monday and was out of hospital on the Thursday with no problems at all. I left with lots of presents as well. I think this is because I am getting good at these surgeries.

Now I am waiting for an operation later this year to have all my pins and plates removed, I hope I get to keep them. I’ll get lots of presents as well.

Well you can see I have been through lots of challenges but finally I’m in less pain and have more freedom in my legs. Having Perthes isn’t great but there are lots of positives, such as queue jumping at theme parks, extra big toilets, going on the news, going on stage with Michael Buble, getting special seats for the James Morrison concert and getting wheel trims that at signed by para-Olympian Peter Norfolk with huge thanks to Lisa Grant. My mum loves the bigger parking spaces because she can park in them OK and my dad likes the cheaper tickets as well.

Last Wednesday I was invited to an activity day at Stoke Mandeville stadium held by The Bucks Physical Disability Team. The activities included archery , fencing, boccia, and wheelchair basketball. It was an amazing day and not only did I have a day off school but I had great

fun, especially fencing and wheelchair basketball and now I want to join the clubs for these activities.

Thank you Lisa for letting me share my experience with everyone, also thank you to Perthes Association, my friends and family for supporting me through my journey with Perthes.

I have done a lot of fundraising for
Perthes which is really easy and you can
do it too, I’ve raised money by selling cakes with my friends, a sponsored silence and I’m currently selling loom band bracelets that I have made, I’ve brought some with me so please come and buy some.

I’m also collecting sponsors for a para-triathlon that I’m taking part in, in September.

Thank you for listening.

Editors Note: Tilly has now completed the Triathlon and had the surgeries to remove the pins and plates and has been able to keep them, keeping the theme of her story up – she also got lots of presents! Well done Tilly and congratulations on raising over £1000 to help others!

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