Q1. What does it mean to be independent? For me, it means not having to rely on others in order to perform everyday tasks that many of us take for granted.
Q2. What is the thing that scares me most about having multiple sclerosis? It’s losing my independence.
I was diagnosed with MS aged 28 in 2008. If someone was to ask me what is the most important functionality for me to retain when living with a disease that can affect any part of my body, I’d say it was arm and hand function (although admittedly it does share a platform with vision!). Hands have the ability to keep me independent. Even if I was to lose complete use of my legs, at least with my arms and hands still functional I would be able to operate a wheelchair, feed myself, clean myself, type on the computer (very important for my job!), dress myself, cook for myself, drive a car….. the list goes on. I’m not alone, a survey by the Bart’s MS team shows that ~95% of people with MS rate their arm and hand function as being more important to them then their lower limb function.
The #ThinkHand campaign being undertaken by the MS team at Bart’s makes independence a central issue. Why? Because currently hand/arm function isn’t used as a primary outcome in clinical trials for disease modifying therapies (DMTs). Instead, it’s walking ability that is used to see how effective a drug is. Consequently, people with advanced MS who use wheelchairs are currently unable to participate in clinical trials of DMTs, even though evidence suggests that the course of MS can be modified at nearly every stage of the disease, including in people who, as a result of the condition, need to use mobility aids (e.g. canes, crutches, wheelchairs etc.).
The #ThinkHand campaign seeks to effect change, with the eventual goal of getting a trial funded to test a DMT in people with MS who use wheelchairs, using hand function as a primary outcome. The aim would be to preserve as much upper limb function as possible. If you’d like to know more, visit the Bart’s research blog and sign up for the latest news. Keeping people with MS as independent as possible should be an aim of everyone involved in treating people with this condition. So, use the #ThinkHand hashtag on social media and encourage people you know to get involved!