What I live With

Radioulna Synostosis

When I was growing up I didn’t  think of myself as being any different to other children until I went to intermediate. It didn’t make a difference to the things that I did at school and nobody noticed (as they still don’t) that I have to do some things a little awkwardly. At college I dare not tell anybody that I was different as I would have been picked on for it.

It wasn’t until I started work and left home that I realised how difficult life was going to be with my arms that way they are.

So what is Radiounla Synostosis? It was first described in 1793 and since then there have only been just over 400 cases reported worldwide. 60% of people with Radioulna Synostosis have both arms affected (yes I am part of the 60%). The radius and ulna are the two bones in the lower arm (yes you have 2 bones there). In my arms these two bones are joined near my elbows. My elbows  work properly. If you put your elbows by your side and your lower arms out in front of you, you can rotate your arms so that your palms are either facing up or down. Both my arms and hands are locked in a vertical position like you use when you shake someone’s hand. 

This makes a lot of things difficult or impossible for me to do and because I am constantly having to compensate for my lack of movement my arms and hands are sore most of the time. Some of these things include:

• Going through drive-throughs at take-away fast food restaurants as I can’t hold my hands out properly.

• Riding a bike for more than a few minutes can hurt my arms, a bike with proper suspension would probably help although I have never had the chance or money to try one.

• When people give me things like coins I can’t take hold of them properly.

• It hurts me to wash and wipe certain parts of my body (I will leave that to your imagination).

• Just lately at some shops I have been handed the EFTPOS terminal which is once again awkward.

• I also feel really awkward when I hug someone.
• Cooking dinner and washing up every night.

Things that help me include: A Tupperware can-opener (this is the only brand that I have used that doesn’t hurt my hands to use), regular hand and arm massages (in my dreams!), a car that is easier to drive and doesn’t require as much maintenance. I now have 2 these things, God is awesome.

I don’t take any medication for this or anything else which is great. Praise God for this.

Additional: In the last 2 years I have had various bone growths that don’t restrict movement but are visible on my hands, shoulders and head. I have no idea why this is happening, it is most likely some other condition ending in “osis” that I have – and yes it does worry me.

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