Arthrogryposis Multiplex Congenita. These were the first-ever three magical words of my life that decided the route for years to come. I was a child when I first heard this tongue-twistery name and it wasn't until my teens that I learnt how to actually say it aloud! Perhaps, it was much later that I began reading about it in a way to understand myself better. Back then, had someone asked me why I couldn't walk, I'd have just told them that my muscles were weak. But today I'm a rolling encyclopedia on AMC! And this June, as the world celebrates Arthrogryposis Awareness Month, I am sharing my learnings with you! Let's decode what Arthrogryposis indeed is!
The term arthrogryposis comes from the Greek words: arthron meaning 'joints' and grypon meaning 'hooking'. Together, it refers to a condition that results in curved joints, also known as joint contractures, all over the body. To be diagnosed with AMC, a child needs to have at least three joint contractures, hence, the term 'multiplex' comes into the picture. My elbows, wrists, ankles, and fingers are the most prominently affected. They're stiff and have a limited range of motion. Lastly, AMC is acquired in the womb, hence, the condition is congenital. Research also shows that 2.5 per cent to 69 per cent of people with AMC go on to develop scoliosis, or curvature of the spine, as their muscles are weak.
Another significant characteristic of Arthrogryposis is the clubfoot, which I discovered one afternoon as I sat in front of the mirror, my gaze dropped to my left foot, which looked a little eccentric — the ankle was curved inwards. At the back of my mind, I knew there was something wrong with my foot but it was only then that I had the revelation that what I had was indeed a clubbed foot — a kind of joint contracture and very common among people who live with AMC! I was caught off guard when I learnt that the earliest evidence of clubbed feet dates back to the 12th century and its first treatment is believed to have originated in India as early as 1,000 BC! Renowned painting The Clubfoot by Jusepe de Ribera, which is housed in Paris' Louvre Museum, also bears one of the earliest illustrations of a club foot!
While the exact cause of Arthrogryposis is not known, it is believed that decreased movement of the fetus (unborn child) in the uterus causes joint stiffness and limits its mobility. This is known as fetal akinesia. Hence, people with AMC — or AMCers as they proudly call themselves — experience movement-related challenges. As I started advocating for AMC and connecting with people who live with it through platforms like AMC Support Inc., I realised not all of them use wheelchairs like me. Some can walk independently while some need support. Yet others may not be able to walk at all and require the support of mobility aids like wheelchairs, walkers, or walking sticks. Some others, like me, also experience a higher degree of disability and require support with activities of daily living.
Additionally, people with Arthrogryposis also experience financial challenges such as keeping up with the recurring bills of physiotherapy and other treatments; emotional and psychological challenges of accepting their disabilities, inventing creative ways of doing mundane things and learning to seek help from others; systemic challenges such as facing discrimination in education, employment, and independent living.
The diversity within AMCers is bewildering. Hence, it is not an umbrella diagnosis that can include other conditions and syndromes within it! It was equally astounding to learn that there are as many as 400 types of Arthrogryposis! However, there are three more prominent types:
- Amyoplasia: This type is characterised by decreased muscle strength and severe joint contractures.
- Distal: In this subtype, the peripheral joints like the hands and feet are affected.
- Syndromic: It is a subtype involving neurological disorders.
While AMC is a non-progressive medical condition (not a disease or illness), some people experience worsening abilities due to age, disability, and other factors. However, these symptoms can be managed with a combination of treatments such as physical therapy, occupational therapy, bracing, casting, or surgical interventions. In some cases, the contractures are so stiff and fixed that the child requires traction to bring them into normal positions. However, such remedies should only be considered after a thorough consultation with a skilled orthopedic surgeon.
Most people with AMC have no cognitive deficits, possess average to above-average intelligence, and have a normal life expectancy. Did you know Asta Anthony Philpot, a disability rights activist with Arthrogryposis, was the inspiration behind the 2011 film Come As You Are? Other famous personalities with Arthrogryposis include Ukrainian Paraswimmer Anton Kol, French politician Damien Abad, and the American painter, writer, and activist Sunaura Taylor.
Google describes AMC as a rare condition. Global data shows that 1 child in every 3,000 live births is born with Arthrogryposis. While there is no data on how many people are there with this condition globally, it is found that the US inhabits less than 50,000 AMCers! In India too, there is no data on the same. However, if we were to go by global estimates, a simple math calculation would show that there are more than 470,000 people with AMC in the country! Since the leading disability law of the land — the Rights of Persons with Disabilities Act (2016) doesn't recognise AMC, it is almost impossible to arrive at a number because people with AMC are counted in the category of locomotor disability.
A question that comes up frequently during discussions and in forums is why is there a need for data on the number of people with AMC. The answer is very simple — it is because the symptoms, challenges, and treatment of people with AMC do not fall within the category of locomotor disability. There is a dearth of awareness and resources on Arthrogryposis. As a result, much like how it is with people with disabilities in general — the focus is on finding a cure for the individual's disability not knowing that there is none. Data on AMC, therefore, would offer a direction and light in the gloom of superstition, trial and error, uncertainty, and lack of awareness. It would save us many futile treatment attempts and direct support in a way that makes the lives of people with AMC fuller, happier, and more efficient!
A strong community network of family, friends, peers, and allies can go a really long way helping people with disabilities realize their potential, capabilities and become their best selves. Numbers about people with AMC in the country would also help form a community of AMCers, thereby offering them psychological and peer support in the form of a little family whom they could share their joys and sorrows with. Arthrogryposis is like a Spanish smorgasbord where diversity is the only element that binds the community together.
Along with that, there's a need to raise more awareness about Arthrogryposis and the many ways in which it impacts the lives of people with disabilities! While there's no organization dedicated to this condition in India, AMC Support Inc. — a USA-based nonprofit that works with families of children and adults with AMC — organises a road trip, The Long Road to AMC Awareness, to reach and support people with Arthrogryposis. The trip concludes with a yearly conference hosted by AMCSI, which offers a great platform to people with similar experiences to gather and network with each other!
This AMC Awareness Day, which falls on June 30 annually, let's come together to know more about our not-so-little community, make them feel seen, read, talk, and discuss AMC, and chart out an inclusive tomorrow for generations to come! Oh and by the way, blue is the colour for AMC. Don't forget to wear something blue on June 30! Let's become more AMC-aware and drive away the blues that surround it, shall we?
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