Dwarfism Awareness: 2016

13 Oct

It’s October, which means that it is Dwarfism Awareness Month again. It’s the month where I like to try and summarise quite quickly some information about Pseudoachondroplasia – the form of dwarfism that I have.

Last year, I summarised physically how the genetic condition has formed me physically – from misshapen joints, to short stature, and an extra-curvy spine: https://lifewithpseudoachondroplasia.wordpress.com/2015/10/09/pseudoachondroplasia-the-low-down-dwarfism-awareness/

The year before that, I demonstrated in photos a few situations where having this condition can make navigating various aspects of life and environments a little extra challenging, and touched on how the disability can make an impact on a person emotionally: https://lifewithpseudoachondroplasia.wordpress.com/2014/10/31/little-things-about-little-me-dwarfism-awareness-month/

This year, I thought I’d try to summarise how living with a form of dwarfism is a life-long thing, which simply isn’t ‘just being a bit short’, as many people seem to think!

Whilst what I’m showing is simply my own experience of how dealing with the condition has interfered with my life, it does begin to show how people with pseudoachondroplasia have to build in time for medical interventions in their lives… and it’s worth noting that there are a whole load of other surgeries that pseudoachondroplasia can cause need for, including some pretty nasty spinal surgeries.

Pseudolifechart.jpg

From the age of 3, when I was diagnosed, I have had many, many hospital/doctor/surgical appointments, with daily injections beginning at 5 years old, and my first major surgery when I was 7. Most recently, I have had two total hip replacements, and there have been various operations between. Next on the list will be a knee replacement, as my right knee is becoming more painful as time goes on (the cartilage is wearing down to nothing).

… And in the future? More hip replacements. Knee replacements. Probably shoulder surgery, with possible replacement. Constant worsening pain as osteoarthritis spoils my joints.

My attitude is just to get on with it; Pseudoachondroplasia is a part of my life and it’s something that I need to juggle with everything else, but I want this post to highlight – for anyone hoping to learn more about dwarfism during this awareness month – that living with a form of dwarfism is not always just ‘being a bit shorter than average’. Dwarfism is needing to adjust life to living with a body far from the average, it is enduring constant pain, it is spending time in hospital, being operated on, and for some, it can also be dealing with prejudice and bullying.

For those who would like to know more about the details of the surgeries I’ve mentioned, how pseudoachondroplasia has played a part in my life, or more about the condition itself… there are plenty of other blog posts for that 🙂 If there are still questions unanswered, I’m always happy to have readers make contact ( rubysallen@hotmail.com or facebook.com/rubysoniaallen ). I’ll try my best to answer anything that may help spread awareness and understanding 🙂

x

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Pseudoachondroplasia – Some positivity!

29 Jun

I was recently contacted by a researcher, who is looking to produce a documentary series on the challenges that people with physical disabilities can face when seeking employment. Having spoken on the phone to her about this today, and discussing how I think that actually, with the right attitude about it, having a disability can build desired qualities in people that employers seek in potential employees, it has got me thinking about the positives I have gained from having pseudoachondroplasia… and how, in fact, some of those qualities that I have may have even helped me in my chosen career! There are two in particular that spring to mind instantly… though I could list a few.

Firstly, in terms of employment, I think that having PSACH has helped to build me into a determined person – many things have been a bit of a challenge in life, but I don’t do giving up! Whether that be when I juggled surgery and A-levels, went skating with a Taylor Spatial Frame on my leg, or found a way to get up stairs with both legs in full plaster cast… I’ve always believed that where there’s a will, there’s a way – and I still live by this. As a result, I can think creatively to overcome issues and (usually…) achieve whatever it is I need to get done. 

Secondly, and more specifically for the career I’ve chosen (human factors for inclusive design… which has a great focus on designing for people with disabilities), I believe that living with a disability myself has made me particularly empathetic. I do my best to consider what life may be like for other people living with a range of disabilities, and I have chosen to dedicate my career trying to help others overcome some of the barriers that they may face; I know that every little help counts when you’re trying to overcome something that life has thrown at you, and if I can contribute to helping others overcome theirs, then I am one happy woman!

Of course, it may well be that without a disability I would have been equally as empathetic and determined (who knows, never have the alternative to compare with, do you?), but I do think that living with PSACH has played a part in that. I have always tried to turn the disability into a positive and something that can be used to my advantage, rather than an excuse not to do things… and I will continue to do so in every element of my life. In terms of employment specifically, I suppose the point I’m trying to make is that whilst many may see a physical disability as something that could be a barrier to employment, I truly believe that when evaluated in a more positive light, the lessons that you learn from living with such a disability can be used to your advantage – and I would encourage anyone who has PSACH to highlight these sorts of traits in a job interview! It may well be that living with this condition has given you that certain something that an employer is looking for in their employees – so please, please, do not let it hold you back!

Just my positive thought for the day! 🙂

x

Unfit and Too Fat… But I have a plan!

2 Apr

There’s no denying it, I’m unfit. Really unfit. I am also too fat. I weigh too much, and I need to do something about it.

fat

However, with my condition, losing weight and improving my fitness is a bigger challenge than it might be for the majority of adults my age who are disability-free. It’s acknowledged within the community of people with pseudoachondroplasia that we do struggle with both fitness and weight, often due to the joint pain that we get on a daily basis. Unlike some athletes with achondroplasia, we cannot just take up sports that we’d like to. Arthritic type pain, together with limited joint mobility, does restrict what we can do. For me, I’ve also been told that with replacement hip joints in place, running is out of the question, as are any sports that would increase the impact taken through my hips. So… options for burning calories are limited!

 

But! As always, I will not use my genetic disorder as an excuse, and I’m trying to think of ways that I can feel fitter and lose some fat.

 

I’ve done a little research, and the weight being recommended as ‘healthy’ by professionals posting online in support groups for me would be 6 stone 2 pounds, or 39kg. SIX STONE TWO POUNDS! Now, I know I’m far from a medical or health expert, but that to me sounds highly unrealistic. I currently weigh much more than that (no, please don’t ask me how much, I won’t be telling…) and I think if I were to weight 6 stone 2lbs, I would look unhealthy. I have the muscle mass of someone with proportionate limbs, but within much shorter ones, so BMI calculations are highly inaccurate for me, and I’m a matured adult who stands at the height of the average 11-year-old (145cm), so height/weight charts simply aren’t going to work (which I forever have to explain to doctor after doctor, unbelievably!). So I’m taking a different approach, and it won’t be done by weight loss alone. I’m going to try and improve my lifestyle until I feel I’m living a healthy one – one step at a time… Here’s my plan:

 

Firstly, I have started taking one-to-one Pilates tuition, in a bid to get some mobility and strength back into my painful and stiff shoulders. This, in turn, will allow me to get back to swimming (hopefully)… the go-to sport for most people with pseudoachondroplasia that I’ve had to give up since my shoulders became more painful over the last year.

 

Secondly, I’ve done some calculations regarding my calorie intake (based on my activity levels and body weight, but also factoring in that compared to an average height adult, I will burn slightly more calories for any equal movement). So now, I have cut down what I’m eating on a daily basis, ensuring to keep all the crucial food groups in place still (including chocolate, as I simply NEED it 😉 ). That does seem to be working already, having lost half a stone so far.

 

And lastly, I’m trying to move more frequently. If only to ensure that my joints are provided the synovial fluid that they need to keep pain at a minimum. Every little counts, right (?), and having lived a sedentary lifestyle for most of the years of my life, I think the slight increase in how much I move should do me some good – even if some joints won’t be enjoying the experience, as they’re almost cartilage-free! :/

 

With any luck, these little changes to my lifestyle will see me feeling fitter and a little less fat in a few months’ time. 🙂 Not for anyone else’s approval, but to help my body – and my mind. It’s bad enough disliking my body for its wonky legs and disproportionate limbs, without seeing an overweight woman in the mirror! So, it’s time for change. And, as I did when I wanted to change my outlook on life, I’ve written this post publicly so that I must commit to this!

x

p.s. Please, no-one tell me to deny myself that chocolate! 😉

Pseudoachondroplasia – the low down. (Dwarfism Awareness!)

9 Oct

It’s October. That means, it’s also Dwarfism Awareness Month. Last year, I posted a collection of photos that demonstrated some of the issues I face on a day-to-day basis as a result of Pseudoachondroplasia, in an attempt to raise awareness of dwarfism (https://lifewithpseudoachondroplasia.wordpress.com/tag/dwarfism-awareness-month/). This year, I’ve decided to be a little more specific – to give an account of all of the physical ways that the condition affects my body… basically to explain how having pseudoachondroplasia doesn’t actually mean I’m ‘just a little bit short’!

Before I begin, I ought to point out that what I’m going to explain is a) only the experience of Pseudoachondroplasia specifically, not an indication of what someone with any other of the 200+ types of dwarfism may experience, and that b) is my own personal experience of Pseudoachondroplasia – some of its traits vary from person to person, and like all my posts, this is just my understanding of the condition – not the understanding of a medical expert!

Pseudoachondroplasia (PSACH) is described by the National Organisation for Rare Disorders as ‘a short-limbed dwarfing condition characterized by disproportionate short stature, joint laxity, attractive face and early onset osteoarthritis’. Whilst the most obvious trait noticed by others is my height (as a result of having arms and legs that are abnormally short in comparison to my body), living with the condition, there is a lot more to it. The most apparent thing being the differences in my joints. I’ve highlighted on a photo of me (a rare, full body length one!), the joints which I find to be affected by the genetic condition and will explain in turn how they are affected.

Pseudo Traits Diagram

So, here goes…

Shoulders:   I have reduced joint rotation of my shoulders, meaning that reaching much above shoulder height has become impossible, and I experience a considerable amount of pain in these joints.

Elbows: I don’t have complete extension in these joints, they also cause a fair amount of pain and often click too!

Wrist and Fingers: The joints in my hands are particularly lax, meaning I have hyper-mobility in these joints and can bend my fingers much further back towards my hand than your average person. Again, these joints cause some pain (particularly if I’m using them for long periods of time, such as writing long documents). In addition, a trait of Pseudoachondroplasia is having ‘short and stubby’ fingers, on small hands. Yep, I have those too!

Hips: My hips are one of the two most troublesome joints in my body – thanks to the effect that pseudoachondroplasia has had on them (well, they were before I had them replaced!). Hip dysplasia is a common trait of the condition, and my poor excuse for a ball-and-socket hip joints had worn down to the point where they needed replacing at the age of 22. It was the best decision I have ever made and I love my new joints, but the originals really did cause some excruciating pain on a daily basis and stopped me from walking about for quite some time.

Knees: Pseudoachondroplasia can cause knock-knees and bowed-knees in the people that it affects. For me, it’s knock-knees (or, genu valgum). This means that even when my feet are apart, my knees still touch. I’ve had numerous surgeries to try and correct this (which are documented in other blog posts), yet none of these have truly worked, because Pseudo-Knees are loose and are able to move sideways a little as well as how they should bend! They’re also quite painful, and are next on my ‘become a bionic woman’ joint replacement list. Replacements of knees and hips are common amongst people with this condition.

Feet: Like my hands, my feet are short and wide. They’re not far off square, being only a UK size 1 in length and very, very wide! It makes buying shoes a complete nightmare, but at least they don’t hurt! 🙂

Spine: I’ve poorly drawn the difference between an average spine and one affected by my condition. I have exaggerated lumbar lordosis (curvature of the lower portion of the spine), which unfortunately makes my stomach and bottom stick out more than they should. Obviously having an overly curved spine causes back pain, which can make standing for too long uncomfortable.

Also!: In addition to the joints often being a different form, and causing pain, it’s worth noting (I think!), that with this condition, a person has the ‘standard’ amount of muscle, just crammed into a smaller space (as a result of shorter arm and leg bones)… making limbs look quite bulky. That’s quite a frustrating aspect of the condition, as it can make limbs appear quite fat!

So, yes, the condition physically affects much more about a person than just their height. The average male height is reported to be 3ft 11inches, with females measuring around 3ft 9inches. I actually stand at 4ft 9 inches, so a foot taller than average, but I still stand quite small in the average world. I’ve grown to accept that – but I have many years to come of dealing with the other traits of pseudoachondroplasia, and that is, the effects that the mutation in the COMP gene that causes my condition, has on my joints.

There we go – my little contribution to Dwarfism Awareness Month… a brief explanation of what else there can be to dwarfism, aside from being a bit on the small side! Of course, if anyone reading this wants to know more, browse the rest of my blog, or, contact me directly to ask any questions you might have: rubysallen@hotmail.com or https://www.facebook.com/rubysoniaallen 🙂

x

What Not To Do? Assume.

15 Aug

Recently, I watched the series of clips shown on Channel 4, produced in partnership with Scope (a disability charity), called ‘What Not to Do’. These are short clips, as part of a campaign by Scope, aimed at tackling attitudes to disability, by highlighting the awkwardness that many people feel around disabled people. Within these clips, was one involving a lady with a restricted growth condition (http://www.channel4.com/programmes/what-not-to-do/on-demand/62097-001) – and some of the interactions between this lady, and an actor playing the role of company staff member below her, reminded me of some of the situations I’ve found myself in before. So! I thought I’d share some of them – as things that can go on the list of, as Channel 4 said, What Not to Do!

Where to start? Crouching down to speak to me. Yes, I am short and it’s unlikely that whilst standing you’ll feel eye contact is as natural as it may be with someone closer to your own height – I definitely have to look up most of the time when chatting to someone, and you’ll probably feel like you’re looking down on me… but! Please, PLEASE never crouch down to try and resolve this! It happened once, with a teacher of mine, and I was furious. I’m not a child; you do not need to ‘get down to my level’, I am used to needing to look up in conversation – so just carry on as you would with anyone else! I was bemused that someone who had known me for years thought this was an acceptable thing to do, and upon reflection, I’ve decided that if anyone in the future does this – I won’t just accept it, I will have to explain how that simply isn’t necessary – and is crossing the line of acceptable behaviour.

What else? Having lower expectations of me because I’m shorter and have a disability. I’ve written another post, detailing what someone with Pseudoachondroplasia can achieve, in response to a search term I’d noticed had brought up my blog before, which questioned whether someone with this condition could lead a fulfilling life. (https://lifewithpseudoachondroplasia.wordpress.com/2014/06/23/what-can-a-woman-with-pseudoachondroplasia-achieve/). I shall reiterate this point. Just because physically I may be a little limited in what I can do, this does not mean I can’t aim highly in all areas of life. I try not to let this disability hold me back, I have many career goals for my future and am slowly but surely ticking things off my list, I hope to settle into a successful relationship and have a family of my own – as most others would hope to, and there are many, many other things I hope to achieve. However, like in the video clip I referred to at the beginning of this post, I don’t understand why people would expect less of me, think my life aims won’t be so high, simply because I live with a disability? So please, don’t ever tell me I’m ‘inspirational’ or anything similar, simply because I’m leading a life more ‘normal’ than you may have expected. I find it almost insulting that you might expect less of me, I am a human being, not a disability. I am not defined by my condition. (I have reason to believe this is how lots of people with disabilities feel, but I won’t speak on behalf of others!)

Thankfully, not every situation acted out in that clip has happened to me – I can’t imagine how I’d react if someone spoke to me like I was a child! However, I have experienced a couple of the others – being picked up on a night out, ‘because I’m so small’. Without asking (when the answer would have been a firm, ‘no’), just to pick me up is NOT acceptable. I am not a doll. I am not a novelty toy you can play with.

Finally, one more assumption that I wish people wouldn’t make, is about my ability to drive. Yes, I am capable of driving. And like in the video, no, I don’t drive a SMART car just because I’m small. I just drive a car of my choosing, with pedal extensions to allow for my shorter legs. Along with this goes another assumption that seems to be made incredibly frequently – my blue badge I have which allows me to park in the ‘disabled parking’ places. Yes, I am young, and yes, when I pull up it may look like a young woman who is about to abuse the provision of such parking places, but actually, I do have a badge. I have a badge because parking further away from the venue I’m trying to access results in me having to walk further, and therefore being in pain sooner. I’m well aware that my disability may not be as instantly understood as requiring a disabled parking badge, as say, someone in a wheelchair for one reason or another, but I wish people would stop making these assumptions that I either don’t have one, or don’t need one! So please – if you ever begin to judge someone before they’ve had a chance to display the badge in the window, wait before you give those disapproving/disbelieving looks!

Apologies for this post turning into a bit of a rant, that wasn’t intended – I thought the Scope/Channel 4 clips do a good job of highlighting some of the ridiculous things people with various disabilities have to deal with. I’d recommend you put aside some time to watch the whole series. I suppose I just wanted to highlight some of the assumptions that are often made about me, because I have Pseudoachondroplasia, and how these assumptions simply shouldn’t be made. I fully accept that the condition does change my life in some ways, but it does not define me and everything I do, so please, please don’t think it does! I would far rather answer a direct question, if you want to learn about how my disability might affect me, than for you to assume! Please, never assume these things!

x

“So, are you a dwarf then?”

8 Jul

Just a quick post, to see if I can get any opinions/thoughts on something that happened to me a couple of days ago – which I’m not sure if I’m comfortable with or not, would you be? Let me know…

So, I had just been up and down the aisles of Tesco, collecting my shopping, then I waited patiently in the queue for the checkout… said hello to the cashier, he said hello back, ‘How are you?’, ‘Fine thanks, you?’, ‘Fine’, you know, the norm. Then, as I was about half way through packing, he asks, out of the blue, “So, are you a dwarf then?”. Stunned by his direct question, I responded, “Well, yes, technically apparently so”, silence. Then, a few moments later – “So, have you been stretched out then? You’re a bit tall.”.  Urm, what?!?

Whilst I’m pleased he had the courage to ask whether or not my obviously short stature is down to dwarfism, rather than just stare, I’m not sure my height/disability/surgical history is actually much of his business? Is it? Or am I being overly sensitive/defensive? I can’t decide – so, thoughts please!

x

Dwarf? Little Person? Midget??! Ruby.

15 Jun

Dwarf. Little Person. Midget.

Just three of the commonly used terms used to describe someone living with a type of restricted growth condition, including pseudoachondroplasia. I, as an individual with such a condition, am not a fan of any of these terms, and I’ve been thinking about why – so thought I would share my thoughts, in case anyone reading this ever wants to make reference to a person living with such a condition. Before I begin, however, I ought to state that when mentioning such terms, I am not condoning their use – and mean no offence to anyone who disagrees with what I say – as I’ve stated, these are merely my opinions on the matter.

So, what got me thinking about this? Not that someone had called me by any of these terms, but because I have been engaged in many a conversation lately about how to refer to someone who is living with dementia. NOT as a sufferer, NOT as a victim, nor any other term, which may imply that these individuals cannot remain their own person, but as ‘a person living with dementia’ is the answer! At a Dementia Friends Champion training day that I attended just last week, this issue was discussed again – about how media refers to people living with dementia, and how this contributes to a negative outlook on these people and their lives, as though they have become their disease, rather than a person living with it. As the population ages and dementia becomes a topic which is increasingly discussed in the media, the terminology used has become more of a talking point – to ensure that individuals living with dementia do not become ‘sufferers’ in the eyes of others. However, this made me think – as people living with dementia are gaining awareness of a ‘correct’ way to acknowledge their condition, then why is it still acceptable to group people with a growth condition under a term with negative association?

Let’s begin with the most obvious, and most widely acknowledged offensive term that is sometimes (though thankfully not as often now!) used to refer to someone who has a growth condition – Midget. Not only is this often factually incorrect as a description, because a ‘midget’ used to refer to someone short in stature that is in proportion, whereas many growth conditions leave individuals with disproportionate bodies, but it is derogatory – particularly now it is known to be an offensive term.

Then, a more widely accepted term used by many (particularly in the US I realise) is ‘Little Person’. Whilst many people with growth conditions are happy to be referred to as this – I’m puzzled as to why, and would respectfully ask anyone who considers labelling me as this, not to. Why? Because ‘little person’ to me, is belittling, a term more appropriate for a literal description of a child, not an adult who just happens to be shorter in stature than average. I realise that societies tend to categorise people who are ‘slightly different to the “norm”’, but the use of ‘little person’ is not something for me, thanks!

Dwarf, defined as ‘A person with a usually genetic disorder resulting in atypically short stature and often disproportionate limbs.’ (http://www.thefreedictionary.com/dwarf). Definitely a widely acknowledged and used term, even in the medical field… so I suppose I ought to accept that – but only, I believe, in a medical environment – where my medical condition and height may be relevant.

The point I’m trying to make is – much like people living with dementia don’t lose their individuality and become their disease and should be named by their chosen name they have lived by their whole life – that people who happen to have a growth condition are far more than that condition. They are just people who are living with a growth condition as a part of their life. Much like you may be an individual living with anything – whether that is impaired vision, freckles, or blonde hair. I, am an independent, adult woman, capable of most things that any other person is – I do not need to be labelled, and my height has very little to do with anything. Nobody wants to be labelled when the label being used has negative connotations – and I am no different. I go by Ruby, and Ruby alone. Not ‘dwarf Ruby’, nor ‘Ruby the Little Person’ or ‘Ruby the Midget’… and I would challenge anyone who tried to refer to merely as an example of a type of growth condition! I do not allow my medical condition to affect the way that I live my life, so I certainly don’t want it to allow me to be labelled – and I believe this is probably the opinion of many living with a growth condition… the preferred reference is by name – even if some people are more accepting of the widely used terms! So please, if you’re unsure how to refer to someone of shorter stature, remember, the answer is, as with anyone else….BY THEIR NAME.

x

p.s. For reference, if I was going to be a ‘dwarf’…. I’d probably be Sleepy – particularly after the intense period of coursework I’ve been doing recently 😉

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