Celebrating International Women’s Day: Remarkable Women of the UK MS Register

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International Women’s Day, marked every year on 8th March, is a day commemorated across the world where the social, economic, cultural, and political achievements of women are celebrated. The day also marks a call to action for accelerating women’s equality. IWD has occurred for more than 100 years, with the first gathering in 1911 supported by over a million people. Today, the day belongs to all groups collectively everywhere. This year’s theme is #InspireInclusion.

As we commemorate International Women’s Day 2024, it’s an opportune moment to shine a light on some of the extraordinary women involved in the UK MS Register. From the researchers who are making strides in their respective fields to the female participants who are navigating the challenges of living with Multiple Sclerosis (MS).

Michèle: Michèle was diagnosed with RRMS at the age of 48 in April 2020 after a sudden onset in December 2019. Although she has not experienced further relapses, today she lives with ongoing mobility and coordination issues as well as extreme fatigue. Prior to her diagnosis Michèle was an independent and active person who worked full time. She says that her diagnosis has been life-changing; she no longer drives and can no longer easily take part in activities with friends and family, but does work part time. Michèle joined the UK MS Register in 2022 after seeing an article about the study in an MS Society newsletter and sees the benefits of being involved, saying:

“Whilst hopefully providing some useful real-life evidence for the study, I have found the reports produced after each questionnaire session extremely useful in understanding and monitoring my own MS Journey.”

Wanting to put her skills to good use Michèle is an active member of the MS community. She is a communications volunteer with the Bradford MS Society Group she also takes part in many online MS discussion groups and forums both nationally and internationally. Michèle strives to share her MS knowledge saying:

“I am very open about my condition as I do believe the more people that are aware and knowledgeable about MS and how differently it can affect people, the more likely more effective treatments or even a cure is developed.”

Michèle also recently volunteered to be part of the MS Register’s Clinical Advisory Board. By volunteering and being involved in the MS Register Michèle has taken a difficult, life-changing, personal experience and used it to help others. Read more about Michele’s journey here.

Sarah: Sarah is a research analyst who joined the UK MS Register team in 2022. Prior to working with the Register, Sarah helped co-ordinate clinical trials and academic studies at Imperial College NHS hospital sites in London. She completed her undergraduate course in Neuroscience and Psychology in 2016, and more recently completed an MSc in Neuroimaging for Clinical and Cognitive Neuroscience at the University of Manchester with a research project looking at MS.

Sarah lists one of her biggest achievements in her current role as having her first paper published. She has recently been conducting research into late-onset MS and her work has been published in the highly distinguished peer-reviewed medical journal Annals of Neurology. In addition, Sarah presented her work to an audience of 3000 people at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) conference in Amsterdam.

“I never thought in a million years I would be able to stand up and speak in front of so many people, but with a lot of support from wonderful colleagues I was able to achieve something I never would have thought possible!”

Sarah is aiming to complete a PhD over the coming years. You can read more about Sarah’s research here.

Helen: Helen is a long-time participant of the UK MS Register and was diagnosed with Relapsing Remitting MS in 2009. As for many people Helen’s journey to being diagnosed was not without stress and anxiety; at the time she had three young children and being told she had MS came as quite a shock. Following the diagnosis Helen was proactive and, keen to learn as much as she could about the condition, she has done her own research over the years. Helen’s hospital team have advised that they think she is now transitioning to Secondary Progressive MS, something she finds confusing to deal with while she waits to access further support. However, Helen thinks of herself as a very positive person and refuses to let her MS define her, saying:

“I love life; I’m now Nannie to three granddaughters. I’m involved in lots of research for MS which I enjoy and hope it helps other newly diagnosed people. I love being outside with nature and I’m very passionate about the environment. I also love my Drum and Bass music!”

Helen has been with the UK MS Register since it started and says she really enjoys participating, saying:

“I find the graphs showing my progression very interesting and love it when my email comes though saying I need to fill out more questionnaires! It really helps me build a picture of my journey with my MS.”

Without dedicated participants like Helen and their commitment to the Register, we would not have such a rich pool of data or be able to conduct vital research into MS.

Susan: In order to ensure the UK MS Register is meeting the needs of its participants the team coordinate a PPI group, the self-named Brain Stormers. This group meet monthly online and offer their support and feedback on all manner of projects, from research proposals to website wording.

Susan is an integral member of the Brain Stormers. In addition to contributing her opinion during meetings Susan also recently wrote a fascinating blog for the Register on MS and the menopause. Having worked for a women’s health charity this is a subject matter about which Susan is well-informed. In summary, Susan was diagnosed with MS just before her 40th birthday and went through the menopause a few years later. There are 40 symptoms of MS and 36 symptoms of menopause. Remarkably, 20 symptoms of menopause are also symptoms of MS. Susan believes that to improve treatment for women, neurologists and/or MS nurses should to be menopause trained, preparing them to discuss menopause with female patients over 40.

“It’s ironic that even though ¾ of the people with MS are women, we don’t focus on the MS/menopause links more often. That might be because society in general doesn’t talk about menopause a lot.”

In addition to being part of the Register and the Brain Stormers, in 2018 Susan became involved in setting up a local group in London (West Central London) and was also elected to the MS Society Board of Trustees.

We are so grateful to have women like Susan as participants on the Register who not only contribute their time completing questionnaires, but also support us in lots of other ways. Read more about Susan, and her journey with menopause and MS here.