Living with multiple sclerosis (MS) can be challenging. I have a personal connection with MS, as my grandmother and great grandmother were both diagnosed with the disease. My grandmother has been living with MS for around 20 years, after it took nearly 5 years for her to receive a definitive diagnosis.
World MS Day officially takes place on 31 May 2017 and will be observed throughout May worldwide. The aim is to bring the global MS community together to share stories, raise awareness, and campaign with and for everyone affected by MS. The theme of this year’s World MS Day, ‘Life with MS,’ particularly resonates with me, as it’s about sharing everyday tips for life with MS that may help someone else have a better day.1 As a relative of someone who has been living with MS for a large part of their lives, I think it’s a great initiative for patients and family to share their experiences, which may help someone else.
There are currently 2.3 million people living with MS globally. MS is an auto-immune disease where the immune system attacks the protective layer surrounding nerves, called the myelin sheath. Damage to the myelin sheath interrupts the usual signals along the nerves and causes nerve damage. Unfortunately, the cause of MS is currently unknown and at the moment there is no cure, however, there are treatments available that can help with some forms of MS. The symptoms vary from patient to patient and may include blurred vision, weak limbs, tingling sensations, unsteadiness, memory problems and fatigue.1 For example, my grandmother struggles with heat sensitivity and will often not be able to move during hot weather.
There are different types of MS, including relapsing remitting, primary progressive and secondary progressive.2 My grandmother and great grandmother were both diagnosed with primary progressive MS, which affects 10–15% of patients, however, the majority of patients will have relapsing remitting type.
As there is an increased risk of MS for those with a family relative who have been diagnosed with the disease, especially for women in the family, both myself and my mother like to keep up to date with the latest research in the field. Recently, a new trial has launched, which has given hope to the MS community. The trial will recruit more than 1,000 patients with secondary progressive MS. The trial is investigating whether simvastatin, which is part of the statin drug class used to lower cholesterol, can slow down disability progression.2 A previous, smaller Phase II study found that the level of brain tissue loss, an indicator of MS progression, was lower in 140 patients who received simvastatin compared with placebo.2
There are many ways to get involved in World MS Day. For example, you can share a tip about how to help with the challenge of living with MS by using the hashtag #LifewithMS through YouTube, Facebook, Twitter, or Instagram.1
References: 1. World MS Day Website. Available at: https://worldmsday.org/about/ Last accessed May 2017; 2. MS Trust Website. Available at: https://www.mstrust.org.uk/news/news-about-ms/simvastatin-trial-planned-secondary-progressive-multiple-sclerosis Last accessed May 2017.