First of all, a little Arthrogryposis history. The word derives from Greek, meaning “curved joint”. Multiplex Congenita describes having more than one curved joint, or contracture at birth. I have the “classic” form of Arthrogryposis, or amyoplasia, affecting both arms and legs.
In Arthrogryposis, A Text Atlas1 (edited by Staheli, Hall, Jaffe and Paholke) I saw the Ribera2 painting for the first time, and marvelled that those arms look just like mine. My first look at Arthrogryposis history and I find it fascinating.
The first description of Arthrogryposis is credited to Adolph Wilhelm Otto in 1841, from a drawing in his notebook famously labelled, “A human monster with inwardly curved extremities.”3 He was describing what became known as the classic form of Arthrogryposis, affecting arms and legs.
In 1923 Walter G. Stern adopted arthrogryposis multiplex congenita to describe someone like me, with contractures in all limbs at birth.
Amyoplasia is another later term describing the classic form of Arthrogryposis.
I’ve always called it Arthrogryposis and added Multiplex Congenita once I’d seen it on my hospital notes, when no one saw me looking. The shorthand often used to identify our disability is AMC; it’s easier to write and reduces the probability of spelling errors!
Arthrogryposis on TV
Wednesday, 15 September 1993 and Wednesday, 30 March 1994 BBC 2 televised a documentary using Otto’s description as its title. The programme featured four people with Arthrogryposis and TAG – The Arthrogryposis Group4, the national support group.
Sadly the documentary is not available online; almost 25 years later, it would make interesting viewing.
Arthrogryposis on the Web
Whilst the documentary is unavailable, there is no shortage of videos about Arthrogryposis on You Tube5. Type the name into Google6 and you can lose hours reading and following links. From Pinterest to Twitter, search Arthrogryposis and you’ll discover how diverse this disability is, and how we all cope in the world today.
Here are a few relevant websites you may find useful/interesting on your journey.
Information, support and conversation
- TAG (The Arthrogryposis Group) http://arthrogryposis.co.uk
- Founded in 1984 by Diana Piercy, the national support group for people with Arthrogryposis in the UK.
- AMCSupport (Arthrogryposis Multiplex Congenita Support, Inc.) https://www.amcsupport.org/index.html
- Started by Ani Samargian as an online arthrogryposis multiplex congenita (AMC) support group in July of 2005.
- CAF (Contact a Family, UK) http://www.cafamily.org.uk/medical-information/conditions/a/arthrogryposis/
- A national charity for families of disabled children, helping them get together for support.
1Arthrogryposis, A Text Atlas edited by Staheli, Hall, Jaffe and Paholke. Written for the medical profession this book is quite graphic and is not always easy to look at. The link downloads the book as a PDF file.
2Boy with the Club Foot by Jusepe de Ribera 1591-1642. For more results try this Google search: ribera boy club foot.
3Adolph Wilhelm Otto (1786–1845), German anatomist – originally from August Wilhelm Otto: Monstrorum sexcentorum descriptio anatomica. F. Girt, Breslau 1841; reprinted in Leonard F. Peltier: The classic. A human monster with inwardly curved extremities. By Adolph Wilhelm Otto, 1841. Clin Orthop Relat Res (1985) (194) pp. 4–5, Public Domain https://commons.wikimedia.org/w/index.php?curid=9630127
4TAG – The Arthrogryposis Group
5Arthrogryposis on You Tube.
6Arthrogryposis on Google.