Tag Archives: dwarfism awareness month

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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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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