Archive | March, 2012

Leg Straightening

29 Mar

At the age of 7, I had my first surgery in an attempt to straighten my legs.  This was to involve breaking both legs in two places, pinning them in place, and putting them from thigh to toes in plaster cast for three months whilst they healed.

I’ve never been afraid of hospitals, needles, or anything related to surgery – luckily! In fact, the whole experience was quite a positive one.  The surgeon (At the Royal Free in London) was fantastic, she made me feel at ease and had told me what she was going to do – and how this would help me in the long run.  Wheeled down to theatre to be given a general anaesthetic before the operation began, I was absolutely fine. My parents, understandably, weren’t.  They were upset about the whole thing and hated seeing me ‘go to sleep’.  For me though, the feeling of anaesthetic was amazing. Yes, that probably does sound a little wrong – anaesthetic isn’t there to be enjoyed – but I did enjoy it, the hazy feeling of drifting off is unlike any other experience I have ever had… I suppose probably could get the same feeling from other drugs, but I don’t meddle with things that aren’t given to me in hospital! haha!

When I woke up, my legs feeling heavy as they were weighed down with thick plaster of Paris.  Yet, given a little while to wake up from feeling groggy with anaesthetic, I was chatting away again to the nurse – wide awake and ready to go back to the ward.  I can’t remember how long I was in hospital for before I was allowed home to continue with recovery, but I know I didn’t really mind being there! Being kept entertained by the in-hospital ‘school’ and having my family there to chat to most of the time was absolutely fine by me! 🙂 The only moment I remember being worried was when I noticed there were dark red stains on the plaster cast of one leg. Panic! It’s blood seeping through! ‘No Ruby,’ Mum said, ‘it’s Ribena, you spilt it earlier, it must have got onto your cast!’.  I’m not sure for how long I was tricked by this response, but it reassured me for the moment at least!

I was allowed out eventually – given a wheelchair to use to get about, as walking with two legs totally plastered up isn’t possible(!)- and went home.  8 weeks of recovery time. At the time, I don’t know whether or not it felt like the time dragged… but I kept myself entertained, reading, drawing, colouring in the plaster cast (and playing tic-tac-toe on it!) and cuddling my new puppy.  Yes, whilst looking after me, who couldn’t move about and my younger brother who at the time was only 1 year old, my parents were persuaded to buy me a puppy as a ‘Recovery’ present! How thrilled I was! I loved him. I’m not sure he was quite so loved by Mum when she had to push me in a wheelchair, have my brother in a back-carrier for babies, whilst dog walking, and he would run about between the wheels. Tricky, but she managed it! 

8 weeks later (some of which I had been going to school for, when the Summer holiday had ended), I was back into hospital to have the casts removed.  Physiotherapy was soon on the agenda, and I was handed a walking frame to begin my walking with.  I didn’t use it for long (which 7 year old wants a frame? There are crutches!) and was soon zipping about everywhere with crutches… on my newly straight legs!

Unfortunately, the straight legs didn’t last forever.  As I grew taller, the deformities returned, and I was once again left with knock-kneed legs – just with a whole load of scars on them!  It was a disappointment, but the surgeon had told me she wasn’t giving up yet…

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Growth Hormone Injections

28 Mar

I started having daily genotropin injections when I was five.

To ‘train’ themselves to give injections to me, their daughter, my parents were told to inject a needle (but not inject any of the expensive growth hormone drug!) into an orange.

I’m still not sure to this day that injecting an orange can be anything like injecting another human, but this is what they were told to do!  Soon enough though, they had to brave it, and inject me.  Luckily, I am not and never have been, afraid of needles, so the experience wasn’t as traumatic as it may have been for other children – but that isn’t to say I enjoyed it! Every evening, the drug, needle and injection pen would be removed from the fridge, I would have to bare my thigh (though it could have been my stomach, if I had preferred) and either my Mum or Dad would inject me with the daily dose of the hormone drug.  Every. Single. Evening. For ten years. Such an inconvenience when I had other things I would rather be doing! Yet, I am still very pleased my parents made the decision to give me these injections, as they didn’t have to -and not all doctors believed at the time that the injections would make a difference to my growth rate, or final adult height.  In my mind, it can’t have done any harm – so it was worth a few seconds of pain each evening, just in case it had an impact and improved my growth.

However, I have quite recently done a little research of my own into growth hormone injections for children with PSACH and whether they are recommended, 15 years on… and no, no they aren’t.  Apparently now it is believed that these hormone injections will have little to no effect, as children with the condition are not lacking in growth hormones themselves, but have a different build to most children due to genes alone.  I have read somewhere (but of course now I wanted to reference it, I can’t find the paper I read it in!) that these hormone injections can actually have a negative effect on growth. Do I believe that? No I don’t.  I am a ‘tall’ (for someone with Pseudoachondroplasia anyway… but I like being able to use the term ‘tall’ about myself!) 137cm, so clearly the injections haven’t had an adverse effect on me! And well, if I was asked whether I’d recommend to parents of a child who has PSACH to give their son or daughter the injections? Yes I would.  It isn’t possible to 100% prove in any case whether growth hormone injections have made a difference to growth, as you can never see what the alternative may have been – so in my eyes, I don’t see the harm in trying! 🙂

School Memories

22 Mar

I don’t remember much from when I was a young child, but I do know I enjoyed school. I was a sociable little thing, into singing, acting, dancing, reading, painting, drawing and all things arty.  Capable in all the subjects, but P.E.  I only have vague memories of participating in P.E. lessons, and none of them are great.  Having short and painful legs meant that I couldn’t run and jump about in all the activities we were being asked to do. Mum has also told me about a sports day at preparatory school which I took part in, where I was treated differently and it upset her.  The teacher was no doubt trying to make things easier for me, to ‘give me a fair chance’, but being treated differently isn’t something I wanted, nor something my parents wanted for me.  I was to start the race half way along the track.  This hurt my parents, to see that their daughter was being singled out – her disability being highlighted.  Luckily (perhaps not the best choice of word!) I didn’t take part in a sports day after that year, so there was no more isolation.  The reason for not participating any more, was surgery. Lots of it.

I will explain more about the surgery I had when I was a younger in another post, as I’m trying not to go off track here.

Unfortunately, having surgery at an age where much of school is about socialising was quite difficult, and I suspect would have been even more so if I hadn’t been such a strong minded and determined child.  Luckily for me, I had many friends at school, who were extremely accommodating when I was in a wheelchair, or using a walking aid – they were really helpful, and of course, they got to push a wheelchair around!  However, I do remember feeling a little left out as my class mates played ‘bull dog’ or ‘stuck in the mud’ in the playground, whilst I had to sit and watch from afar in the wheelchair.  It didn’t happen too often though, and I was quite content chatting away to the member of staff on playground duty – so not a terrible experience in all honesty!

An embarrassing school memory I have was shortly after having surgery on both legs.  The embarrassing situation being at break-time, when Mum would come into school to take me to the toilet.  At 7 years old, this isn’t something you want your friends to know about! Your Mum, taking you to the toilet when you’re seven? SEVEN?! haha! This happened again when I was about 10 – even more awkward! I hated it, but had to just get on with it – brush it off when the topic of conversation arose with friends!

All in all though, having periods of time when I attended school in a wheelchair didn’t affect my enjoyment of school too much.  I attended a small, private school, which had some truly excellent staff.  My coat peg was lowered, hand rails fitted for all steps around the school to make it easier for me, there was always an offer of help getting around – and when there were outdoor P.E. lessons, I got to sit in on classes with younger children and help look after them, which suited me just fine!  I am just so pleased my parents took the attitude that they did – that I was going to continue schooling in the way everyone else did , whether I had two legs completely in plaster cast or not!  Being able to continue with life as normally as possible, meant I didn’t think too much about the physical limitations I had and I didn’t really view myself as ‘disabled’, just ‘different’.  I was the really small one in the class, but the small and smiley one! 😀

Diagnosis

21 Mar

Okay, well I thought I ought to begin at the very beginning- when my parents were told I had Pseudoachondroplasia.

Mum had already noticed that I wasn’t the typical toddler, climbing over furniture and running everywhere, yet put it down to my nature and the fact I was a calm child. However, when she noticed that I was frequently getting pain when I had bent down and would struggle to get back up again, I was taken off to the GP. The problem was, I wouldn’t necessarily be in pain during that doctors appointment, and although more than one doctors appointment was booked, and a doctor was called to come see me at home once (or twice? I’m not sure, I can’t remember this myself), there were no visible signs to the medical professionals. So, this meant, in their eyes that there was nothing wrong and my Mum was a neurotic mother! Or was she?!

I’m not entirely sure in what order everything after this happened… but eventually, after getting the doctor to recognise that there were unusual patterns developing in the way my body worked (that I would get pain whilst bending down and I couldn’t walk as far as other children could), a misdiagnosis and many tests and x-rays, at three years old, I was diagnosed with Pseudoachondroplasia.

Being told that their daughter would be shorter in stature than her classmates, would suffer pain in her joints from a young age, and would require surgery later in life to correct bone deformities must have been quite a shock for my Mum and Dad. Being their first child too, parenting itself was a new adventure, let alone bringing up a child with a physical disability!

My parents were told that I had a ‘mild’ case of the condition. I have since been told there is no such thing as a ‘mild’ case. Yet I have read articles saying that in fact, there is such a thing. Either way, I have Pseudoachondroplasia. I am one in 30,000! 😉

A Quick Hello

14 Mar

Right, well this is my first ever attempt at a blog… I’ve never really known how to go about them, but here goes!

I’m not sure that how I’m going to be writing is in fact a blog, as it is more a diary of reflection – covering events in my life that are associated with my growth disorder, Pseudoachondroplasia. Either way, welcome to my ramblings!

I decided that I would write about my experiences of having Psach (I can’t keep writing the whole word, pseudoachondroplasia… it’s long!) as recently, I had the parents and grandparents of a little girl who has just been diagnosed with the disorder contact me on Facebook.  They had recently had the shock of being told their gorgeous little daughter has a growth disorder and that her life may not be the same as most other children… so naturally, they wanted to gain as much information about the condition as they could, and speak to as many others who have Psach as they could.  They wanted to know all that they could to support their daughter.  I have spoken with them all quite a bit since they first made contact and explained to them much of my experience, and I hope that this has helped them in any way possible.  However, discussing the matter with the family lead me to look for other’s experiences online… and I can’t find any! Not one person with Psach has written their experiences of the condition online (Well, not that I can find anyway!). So… I thought I’d give it a go.     🙂

I’m Ruby, I’m 22 years old, I live in England (UK) and I have Pseudoachondroplasia…

I’m not quite sure where to start from, so it’s just this little hello message for now.  I’ll write again soon!

x

p.s. If anyone wants to contact me regarding anything I post – please feel free to comment on here, or send me an email to: rubysallen@hotmail.com Or, tweet me @rubysoniaallen

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