Roger's story
I have a rare disorder called Radioulna Synostosis. None of my family have this disorder and I have had it since birth.
Radioulna Synostosis is a rare condition where there is an abnormal connection between the radius and ulna bones of the forearm. It was first described in 1793 and since then there have been just over 400 cases reported. Around 60% of people with Radioulna Synostosis have both arms affected.
Both my arms are affected and I visited the hospital every year while I was growing up to get my arms checked and x-rayed.
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 dared 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. Everything I do with my hands I have to compensate for my lack of movement in my lower arms. Although I am used to it, there are some things that I can't do or struggle to do. As a result, my hands and lower arms nearly always have sore muscles.
I can’t go through drive throughs at takeaway 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). Polishing my car is also difficult and has to be done over several days. I sometimes have trouble cooking at night if my hands or arms are too sore. I also feel really awkward when I hug someone, that being said - more hugs would be nice.
Things that would help 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; a car that is easier to drive and doesn’t require as much maintenance.
I don’t take any medication for anything.
Additional: In the last two 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 or if it is some other condition ending in “osis” that I have - and yes, it does worry me.