There comes a point in most restricted growth person’s life or for parents with kids with a form of dwarfism when you need to reach out to people who are going through similar experiences. This is where charities like the Restricted Growth Association (RGA) and the Child Growth Foundation (CGF) is pivotal to providing this support network for people and parents alike.
From personal experience, it’s the RGA that I have found to be most helpful. Why? Not for the medical information, or answering awkward questions by parents looking for reassurances for the future of their own children, but because it was there to help facilitate my own personal journey of acknowledging my restricted growth for myself.
You talk to people who aren’t RG, but there does come a point when people’s eyes glaze over and you can almost here them think ‘here she goes again’. Whilst it might seem unfair of said people because it makes them feel uncomfortable, I do sometimes wish that I had joined the RGA sooner than my mid-twenties. Maybe then I wouldn’t have blithered on at people so much in the vain hope of finding an understanding that really I needed to go find for myself. I had heard of the organisation years prior to that age, but was under the impression it was for people with achondroplasia, but how wrong can one person be?!?
As I walked into my first RGA event, I met other people with many different forms of dwarfism and by the end, came away with a bunch of firms friends who I am still in contact with today. Joining was a turning point for me. Seeing other people with restricted growth from all walks of life, getting on with life and just being able to talk to someone at eye level was priceless. I began the slow process of realisation that I was not alone and had a place I could share experiences, not in a pity me fashion, but laugh at others, experiences and most importantly, myself.
So while the RGA may not be your average tug-on-heart charity, its support to people like myself is immeasurable. Seriously, if you’re a person of restricted growth in the UK – join the Restricted Growth Association.
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