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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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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!

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A Consideration for the Future…

3 Jul

I am not, by any means, the kind of girl who wants lots of children as soon as possible.  In fact, at the moment, I’m not so sure I will ever have children of my own.  Yes, I am only 21 years old, and am yet to settle into a steady relationship with a guy, but I have always felt that adoption would be a consideration for me when I get to the point in my life where maternal instincts kick in (assuming they will!).  There are so many children that are in need of a loving family and home, so I have always said I would like to consider providing this for a child… and it would also be a way of knowing the child I would bring up wouldn’t have inherited the mutation I have in my genes, and therefore have Pseudoachondroplasia too.  However, as I have recently been talking to many people who have Pseudoachondroplasia, some of which have children of their own who have the condition too, it has made me consider whether or not I would want to take the risk of having my own child, as there is a 50% chance of them inheriting the mutation in the COMP gene.  I will state now, before I offend anyone, that if I were to have a child with the condition, I would not love it any less.  I would not think differently of them.  I just began to wonder whether there was any way to avoid having a child with Psach and having to watch them suffer the effects of it.

I asked on a ‘Facebook group’ whether or not any parents on there had experienced any prenatal tests to determine whether their child had Pseudoachondroplasia, yet did not get quite the response I had hoped for.  It seemed I had offended some members as they thought I should be accepting of having a child with the condition, and I was told that no, they had not had any testing, they would wait until their child was old enough to be diagnosed (at around 2 or 3 years of age).  I felt bad.  I felt that perhaps I shouldn’t have asked, as I really hadn’t meant to cause offence.  Yet, I still wanted to know what was available in terms of avoiding my baby (hypothetically! I’m not pregnant!!) having the same disorder that I do.  I knew that scans would provide no answers as there are no physical signs until a child is around 2 years old, but I wondered if there was opportunity for genetic testing.  There must be something, surely?!

Having had the response from questioning the matter online that I did, I decided to carry out my own online research – just the standard Googling of such matters really!  However, I received a message from one woman on Facebook telling me about a method she had been told about, which might answer my question she had seen on the group.  Pre-implantation genetic diagnosis, or PGD.  PGD refers to procedures that are performed on embryos prior to implantation, sometimes even on oocytes prior to fertilization. PGD is considered another way to prenatal diagnosis. When used to screen for a specific genetic disease, its main advantage is that it avoids selective pregnancy termination as the method makes it highly likely that the baby will be free of the disease under consideration. PGD thus is an adjunct to assisted reproductive technology, and requires in vitro fertilization (IVF) to obtain oocytes or embryos for evaluation (http://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis).  Whilst I would never choose to terminate a pregnancy myself as I am very much against abortion, this procedure still very much grabbed my attention – and I was so thankful that the woman who messaged me had passed on her knowledge!  Pseudoachondroplasia has only recently been added to the list of genetic disorders that can be tested for using PGD, and for me, this is ever so exciting! I have already said I have no plans to have children in the near future, but this means that if I do ever choose to do so, I should be able to avoid passing on the mutation in the gene to my children. 🙂 

What is even better news, is that the risks that were thought to be potentially linked to PGD have been researched… and it would seem there are no risks to the baby using PGD.  It explains this in the article I read this morning (which also prompted me to write this post): http://www.bbc.co.uk/news/health-18676894

So, who knows… maybe with this knowledge, my feelings about having my own children in the future will change!

(Note for Mum/Dad when you see this – don’t worry, I’m not talking about having one yet! haha)

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p.s. PLEASE don’t take any offence at what I’ve written in this post, I really don’t want to upset anyone, but am just sharing my own personal opinion on the topic!

A Little Discovery…

24 Jun

So,  the obvious traits of the condition are the short limbs, small hands and feet, joints that aren’t formed correctly and the early onset of joint pain… but! I seem to have discovered another one which had never been mentioned to me before, nor had it been documented in anything I’ve read. Strange nails on the big toes. Yes, seems odd doesn’t it, but I think it’s true (Think I’ll regret writing this the next time I wear flip flops and any friends who have read this look at my feet..)!

The nails on both of my big toes have always been oddly formed. They sort of curl back on themselves a bit, so that the ends of them are pointing upwards – a nightmare to paint, and annoying to anyone giving me a pedicure! However, I had assumed it was just me who had these weird nails, for no particular reason.  However, I recently noticed on the Facebook page of someone else who has the condition a photo of their feet, and they too had these bizarrely shaped nails.  Having asked two more people with Pseudo if their nails are the same (and them confirming that they do), I have come to the conclusion that it is definitely a trait of Pseudoachondroplasia. I have no idea why, but I intend to try and find out (if anyone knows)…

How odd!

Sorry, not the most interesting post I know, but I thought different toenails were worthy of a blog post…. haha! 🙂

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The Importance of Support

30 May

My family and friends are, without a doubt, what get me through life.  I’d be pretty lost without them.

I have an extremely supportive family, who have not only helped me through recovery after surgeries many times, but are there for me on a day to day basis – helping to carry things I cannot as I’m using crutches, getting things for me when they’re out of reach, they drove me to places I could not walk to (before I had a car of my own!) and many other ways.  They understand that some of the small things in life can cause difficulty for me and they try to make things as easy for me as they possibly can… which they’ll never realise how much I appreciate (well, Mum might do once she’s found this post!).  They’ve kept me company and provided entertainment when I’ve been stuck in bed after surgery, they have made me smile when my self confidence has been low, and most importantly, they make me feel 100% accepted.

My friends are extremely important to me too, and I have some incredibly close ones who I value very highly.  There is one in particular who, like my family, naturally considers my physical needs in whatever we’re doing, whether it is shopping so she’ll carry my bags, or going to the cinema and her not walking all the way to the seats at the back to save my legs.  She is amazing. She’ll know who she is, so a big THANK YOU to you m’dear – I don’t think I make it clear enough how much I appreciate you. ❤

All of my friends are important to me though, and I try to make sure that they know it.  There have been times when I’ve felt down about the fact that I can’t do some sports, that I’m shorter than pretty much everyone I know, that I don’t ‘fit in’ to society… but my friends have always been the ones to pick me up, they put a smile back on my face! Some of them don’t even necessarily realise that they have helped me.  They may not have noticed what an impact a comment may have made, or that they’ve subconsciously slowed down when walking so that I can keep up… but I do notice these little things – they show what amazing people I have as friends. For any of you who read this, I really do appreciate you and love having you in my life! 🙂

What I’m trying to get across is how important strong family bonds and friendships can be. There will be times when physically, life is difficult, but also times when emotionally, things can get a little too much for you… and it is in times like those that you really need people around you who understand how you’re feeling.

I don’t know what I would have done in many situations throughout my life so far, if I hadn’t had the support of those around me… so I’m putting it in writing now, to say a massive THANK YOU to everyone who has put a smile on my face and is a true friend to me.  I know it sounds cheesy, but I mean it!

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I Can See You’re Staring, and Yes I Heard What You Said!

22 May

Besides the obvious frustrations of living with Pseudoachondroplasia, what I find most annoying (and upsetting sometimes) is when people stare.  Yes, I am shorter than most people my age, and yes, my legs are disproportionate to the length of my torso, and yes, I do have to use crutches otherwise my stride isn’t smooth, but I am just as observant as anyone else, and I do notice people staring. And commenting. The amount of times I’ve heard ‘look at that girl, she’s really short’, ‘wow, she’s small’, ‘look at that midget’ and all sorts of other height related comments! I’m not deaf, I CAN hear you! The most appalling thing is that it isn’t always children that say these things.  If it was, I could understand – but when a teenager, or an adult says it, I am less than impressed. Surely by the time you’ve spent a few years on this planet you would have acquired a little respect for others, or some sensitivity?! Obviously not.  I have challenged a few people in the past, asking them what exactly it is they find so fascinating about me, because I’ve noticed they’ve been looking for an awfully long time – it results in them blushing, feeling very awkward and an embarrassed ‘sorry’.

The point is though, I shouldn’t have to do this.

I accept that there is no ‘normal’ in life. Everyone is different, physically and mentally. What a boring world this would be if it wasn’t the case!  I think the diversity of people should be embraced.  So why do some people think that anyone who doesn’t fit their idea of ‘normal’ is there to be ridiculed and that it’s okay to stare, point or say things about them?!  I’m pleased that I’m not a particularly sensitive person, because if I was I think I would have extremely low self esteem by now.  What I try to remember is that  it is these people who have the bigger problem, not me.  I may have a different appearance to a majority of society, but what I also have is a lot of empathy for others.  They may consider themselves ‘normal’, but they clearly don’t have much understanding of people – or any consideration for others’ feelings.  I know how I would rather be! 🙂

This is turning into a bit of a rant, which I didn’t want it to be…! I will stop going on now, for fear of making this post one fuelled with anger, but what I wanted to get across was that I think it’s wrong that people stare and point.  It’s rude. It’s hurtful. It shouldn’t be accepted.  I would far rather someone approached me and asked why I was short than to have them point and whisper… I would be more than willing to explain if someone was curious! But if you’re unwilling to talk to the person you’re talking about, then don’t talk about them.  It’s difficult enough facing problems brought about by disability without having others pointing them out!

Okay, rant over! 😉

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The Irritations of Shopping.

15 May

Shopping for clothes and shoes is one of the most frustrating experiences for me.  I can spend hours and hours browsing shops for items to buy, and will still go home with very little. Not because I have no interest in filling my wardrobe with beautiful garments, but because with a body like mine, very few ‘fashionable’ items will fit how they should.

I have stopped wearing trousers for instance, because if I buy a pair, I can’t just wear them… they have to go and be altered to be the right length.  Jackets won’t fit because the bulky muscle in my arms means all the sleeves are too tight.  Even skirts can be an issue as my curved spine means they stick out too much at the back.

And shoes?! I just wish I could walk around barefoot all the time.  The length of my feet would suggest I should be wearing a UK Size 1 shoe (yes, a child’s size!) but the width of them is so much that these shoes would never fit.  This leaves me with two options. 1) Pay to have shoes made especially for my feet.  I have done this once, but at quite some cost, and they still didn’t look like ‘normal’ shoes. Or 2) Buy shoes that are too long, but are wide enough to fit my feet in.  That’s what I usually do.  I live in size 3 shoes.  Well, boots. Specifically Ugg boots. They are the only footwear I have ever felt totally comfortable in, and I wear them every single day. Well worth the £160 they cost me! 🙂 In the Summer, I live in flip-flops, as they can be cut to size if you buy the foam ones.  So I have found shoes I can wear, but I just wish I could go into a shoe shop, and buy a ‘beautiful pair of heels’ that would be ‘too high to be comfortable in’ – Just so I could have the same experience as friends my age do. They love shoe shopping, I absolutely dread it.

It’s not just the clothes themselves that remove the enjoyment from a shopping trip for me – it’s the shops themselves.  I accept the fact that things will be out of reach for me, as shops are set out for customers of ‘average size’, but it is SO annoying having to ask someone to reach things on my behalf.  It does put me off even looking at some things properly, just to save having to ask for help. It’s silly really!

Of course, the pain that comes with standing up or walking for too long probably doesn’t help how I feel about browsing shops.  It does somewhat ruin the possibility of a ‘girly day shopping’.  Then again, it’s a good excuse to go into another café! 😉 It’s just one of the small things in life which for most people are enjoyable, but the challenges Pseudoachondroplasia throws at you can ruin a little.  Not the end of the world at all, but it is irritating!

 

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