Tag Archives: dwarfism

What’s next for the knees?

18 Feb

Since my hips were replaced, I haven’t written much for this blog beyond awareness posts. Primarily because those wonderful new joints have allowed me to live with reduced pain, so I’ve been getting on with life. However…

Over the last year or so, my knee joints – especially the right one – have been getting increasingly more painful. I’ve tried ignoring it. I’ve tried being kinder to it (less moving about). I’ve tried painkillers (paracetamol, ibuprofen…). None of this has worked, and I can’t even use crutches for a while either now my shoulders have decided to join the painful joint club! So, last week, I decided to go and see a GP about this nuisance joint. I’ve owned up that I’m not coping particularly well with the pain (unlike me to be honest about that..) and that I think it needs some attention from a medical pro!

My condition hasn’t been followed up at all since the last NHS surgery was done 6 years ago – and even then, the check ups were just in relation to the frame that had been fitted to my leg. Whether my body needs medical attention has – until now – been left to me to determine. This hasn’t impressed my new GP, who feels that the joints should have been monitored to prevent the pain getting as bad as it has (to the point where I’ve opted to work from home when I can, so I can wrap the knee up in heated blankets or with heat pads to relieve the pain). So, the new GP has given me a prescription for a stronger painkiller for the short-term, but has also sent me to have an x-ray of the knee joint. I have an appointment next week to discuss the x-ray and the next move (which I’m afraid may well be joint replacement – which will be quite something to juggle with my current life plans). The GP has said before this appointment, he will read through my medical notes so he can give the best advice and referrals… this is partially great news, as it means maybe something can be done to reduce the pain, but also something I’m dreading – as once again, this condition has the potential to throw a spanner in the works of my life!

There isn’t a conclusive point to this post… I just thought I’d write it now, so those who read this blog to see what they/their children may face when living with pseudoachondroplasia can follow through what happened and when – as I think this is the beginning of the next joint problem journey!

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THIS is how I feel about Dwarf Actors too.

27 Jan

This is just a quick post, as I happen to have found an article that totally resonates with me. It’s not a recent one, but I have only just found it (via the blog of Lisa Hammond, a British actress who has Pseudoachondroplasia too https://twitter.com/lisahammondwhop) and I could not agree with what has been written by Tom Shakespeare (and said by Lisa) anymore.

It’s an article about dwarf actors, and Tom’s views on this career choice, as a medical sociologist.

I’m not in the acting/film/theatre industry at all, but the following extracts from this article do 100% sum up my view about negative stereotypes being reinforced by the media/theatre/film/etc. and so I thought I’d just paste them onto this blog rather than trying to reword what has already been written perfectly:

 

‘other restricted-growth people’s choices impact on me directly’

‘When people laugh at other characters, like the Principal Boys or the Ugly Sisters, this has no impact outside the theatre. But jokes about the Dwarfs affect the way that the public thinks of people like me.’

‘Despite the differences, I think all restricted-growth people want the same thing: to live in a world where no one is victimised because of their stature.’

‘We just want to have the same range of career choices as everyone else, and to be accepted and respected as equal human beings.’

 

There isn’t much more I can add to this, other than if you have ever wondered why people with dwarfism (including myself) aren’t always impressed by the roles given/accepted by other people with dwarfism, please, just read this, and I promise you, you’ll begin to see why… (thank you Tom for writing this article!) :

 

http://www.telegraph.co.uk/culture/tvandradio/11394321/Its-time-dwarfs-stopped-demeaning-themselves-in-public.html

 

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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 🙂

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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 🙂

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“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!

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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.

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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 😉

https://s-media-cache-ak0.pinimg.com/736x/39/97/c7/3997c72e9e7be826b049a2f2fe8f8347.jpg

Little Things About Little Me… (Dwarfism Awareness Month)

31 Oct

I said at the beginning of October (Dwarfism Awareness Month) that I would post at the end of the month a collection of the photos and thoughts I’ve had in the past 31 days about how dwarfism may impact my life in ways that others may not generally realise… so here I am, with my list of 4 areas…. 🙂

1. The Obvious One.

StoolsPetrol  Out of reach (general) Library shelves Blind cord Bar Height

The height of the environments I enter.

Whether it be seating, reaching things on shelves in the library, not being able to adjust blinds because the cord is out of my reach, or being pretty much face level at the bar when I go out, there are so many many things that everyone of average height seem to take for granted. It probably can’t be helped in some situations, but there are some which could be altered to suit everyone- and to live with lots of minor challenges like this every day is really quite frustrating.

2. Clothes.

Clothes shopping – most girls’ dream. My nightmare. Firstly there is this situation:

Clothes in shop

Not many people can reach ALL of the clothes on a wall like this with ease, but at 4ft 9″, without asking for help (which, for those who know me, you’ll know I don’t like to do!) my choice of clothes is limited by what is in reach!

Then there are the clothes themselves…

Sleeves

Sleeves and trousers are forever too long. It’s my limbs that make me as short as I am, so getting clothes to fit them is a nightmare. I roll/scrunch sleeves up, I fold the ends of jeans up under boots, and I envy all of those who have the normal ‘I can’t find a pair of jeans to fit’ problem! haha!

The same with shoes…

Uggs

Shoe shopping is probably my least favourite type of shopping. With short and wide feet being part of Pseudoachondroplasia, finding any shoes to fit is a challenge which could reduce a girl to tears! I don’t have tears for that though, so I live in Ugg boots, boots that are actually too long for my feet, and flip flops… but it’s a factor of dwarfism which is a constant daily reminder, when I can’t choose a pair of shoes based on them ‘matching an outfit’!

3. The Pain.

It isn’t the case for every type of dwarfism, but for Pseudoachondroplasia, there is a lot of pain involved – on a daily basis. Most of my joints crunch, crack and click as I move, they ache when it’s cold, and they stop me from being a particularly physically active individual. There’s the additional consideration of not wanting to wear out arthritic joints to the point where they need replacing super-early too… I’ve already had my hips replaced, so I’m now very wary of wearing out my knee joints as I know they’ll need replacing in the not so distant future too. Because of all of this pain (which I try to hide from others), I have to alter my lifestyle. It involves a lot of driving, in an adapted car.

Car Pedals

I have pedal extensions so I can reach them with ease. My car is essential to me though… as even little walks to the shops could result in some length of pain for me, which is avoidable by driving. It does mean however, that to those who don’t understand the effects of Pseudoachondroplasia – I seem incredibly lazy!

And finally….

4. Social Situations.

Whilst I’m quite confident around people I know, I lose my confidence the moment I catch someone staring or hear someone commenting about my height/appearance in public. I’ve written about it before in other posts, and also touched on how emotionally it has an impact ( https://lifewithpseudoachondroplasia.wordpress.com/2013/11/04/true-emotions-self-acceptance/ ) but I thought I’d add a little reminder for those reading this who may not have considered it before – how much of an impact a little negative comment from you could make if you pass a comment on someone with dwarfism – it’s enough living with all the challenges of Dwarfism every day without having to deal with that too!

This little poem I wrote a while ago seemed to make a point before, so I will post it again, to reiterate my point..

“Just one woman, diagnosed soon after birth, with a growth disorder, what is she worth?
Being called midget, elf, disabled, short, a freak?
Or to be treated as equal to anyone you might meet?

Yes she is short, she may struggle to walk, doing certain things in life requires a little extra thought,
But more often than not that will not hold her back, until she experiences another verbal attack.

Life presents her with enough little battles without having to suffer ‘behind her back’ cackles,
Thoughtless comments and passing remarks, may seem nothing to you but they break her heart.

She knows that her stature makes her stand out,
She’ll never be able to see above all the crowds,
But having it held against her just should not be allowed.

So just take a minute to think it all through, before you comment; imagine it was you;
Who was born a little different and ‘not quite the same’…
Would you want to be labelled and be called names?

She is just one woman, with huge life ambition,
Just one woman, who gives life her best,
She just happens to have a medical condition,
And deserves to be treated just like all the rest.”

I hope for those not ‘in the know’ about it already, that this post has made you more aware of some of the aspects of dwarfism you may not have previously considered. As always, if you have any questions about anything I write, or want to ask any other questions, feel free to contact me – rubysallen@hotmail.com – I’m all for passing on my knowledge 🙂

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