Shana Pezaro, 37, had a wide range of undiagnosed health problems as a child, through her teenage years and into adulthood. Following university, Shana worked in television production, set up a theatre school for children and taught the piano until numbness in her hands, repeated falls and continence problems began to make life more and more challenging. When a diagnosis of multiple sclerosis (MS) finally came in 2008, Shana – aged 28 - felt relieved to finally have some answers.

I’ve been ill all my life, so adapting to MS just isn’t something that I’ve had to go through. There was no grieving process, there was no loss, no having to overcome anything. It just was.

Shana lives on her own in Brighton, UK with regular support from her partner, Leo, a filmmaker, whom she met two years ago. “I wouldn’t say that I’m a carer - I’m her partner - but I do things that you could technically say that a carer would do,” says Leo. “I’m different in that everything I do it’s of my own volition, and it’s more helpful for Shana that way.”

The most common form of MS, often diagnosed in the prime of people’s lives (20s-40s), affects everyone differently. MS symptoms – either periodic relapses, when symptoms can worsen, or chronic problems with difficulty walking, fatigue, bladder issues and vision problems – can happen at any time.

“I only have carers come in Monday to Friday to help me get up in the morning and I don’t at the weekend because if I want to stay in my pyjamas and get up at 12 o’clock then that’s like the rest of the world so that’s fine,” says Shana. “But Monday to Friday I try to be ready at a normal time in sync with the rest of the world.”

Despite significant advances in treatment over the past 20 years, the unpredictability of MS continues to be a huge challenge for people living with MS as they often have to make last-minute changes to their schedules and even miss out on important events. Shana has to manage her time very carefully to ensure that fatigue doesn’t keep her from doing things, sometimes at the expense of her social life and activities she really wants to do.

If I’m not well and I can’t make something, I’m not well and that’s it. But if I can get out of bed, I do and I go,” says Shana. “I make plans in the best way that I can and everyone has to know and accept that something might happen and it’s out of my control. I’m very fortunate that I’ve got amazing friends and family around me that understand that if I have to cancel it’s because I have to. And it happens quite a lot.

MS Mindset Survey

To better understand the experiences people with MS and their support partners face each day, Roche has conducted one of the largest research studies of its kind amongst over 3,400 people living with MS and support partners across Europe, the US and Canada. The MS MindSet Survey aims to identify the lifestyle barriers that prevent people from feeling in control of their lives and how the unpredictability of the disease impacts them.

The survey uncovered that the unpredictable nature of MS symptoms is holding people back in day-to-day life and that the mindset of people living with, or caring for someone with MS, is often to avoid making social plans and commitments altogether.

How many people with MS said they avoid making long term plans because they can’t predict how they will feel?

44%

How many support partners said they limit their own social commitments because they don’t know how their loved one will feel?

32%

Fluctuations in symptoms mean people living with MS, and those that care for them, have different needs for support at different times. Our research has shown that it’s clear more help is needed with everyday chores and activities that are routine for most of us.

How many people living with MS say they wish they had help with chores and activities inside the house such as cleaning and cooking?

86%

How many support partners say they wish they had help with chores and activities inside the house such as cleaning and cooking when their loved one with MS isn’t feeling well?

82%

In response to these findings, we at Roche are committed to working with patient advocates, like Shana, and the wider MS community to find innovative ways to address and alleviate the everyday challenges people living with MS face.

To learn more about MS support and community organisations in your area visit The MS International Federation - a unique global network of MS organisations - and stay tuned to our digital channels for news from us about our ongoing work to help make life with MS a little easier.

Tags: Patients