Archive | October, 2016

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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