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Podcast: ‘Are we meeting the needs of people living with MS at diagnosis?’ with Professor Alice Laroni and Rachel Horne

RealTalk MS and MS in the 21st Century (MS21) are back with the first collaborative podcast episode of the year: ‘Are we meeting the needs of people living with MS at diagnosis?’

In this interesting new installment, available on demand now, RealTalk MS host Jon Strum is joined by Professor Alice Laroni, MS21 member and Associate professor of neurology at the University of Genoa in Italy, and Rachel Horne, a journalist and person living with multiple sclerosis (MS) in the UK. Together they explore the needs of PwMS at diagnosis, and the ways in which the impact of MS symptoms on daily life could be managed, and possibly minimized, at an early stage after diagnosis.

Key to the discussion in this episode is that each person’s experience of diagnosis is different, whether that be because of how someone responds to their diagnosis, or how it is handled by the healthcare professional. Reflecting on this from a personal perspective, Rachel shares how she froze on hearing her diagnosis and had an ‘out of body experience’. Alice, who has a wealth of experience delivering MS diagnoses, confirms that this reaction is common, as well as another frequent response of immediately asking lots of questions.

Rachel also articulates the fear that so many PwMS experience upon receiving an MS diagnosis: ‘The greatest thing for me was uncertainty. We all know [different people’s stories], one person who will have MS for absolutely decades and they are absolutely fine, and then there’s other people who very quickly accrue disabilities.’

Alice emphasizes how important it is for everyone receiving a diagnosis of MS to allow time to process this life-changing information before accessing support services, and for those support services to provide information that is reliable and easy to navigate. Ensuring that the approach of each healthcare professional, in terms of level of care and information, is tailored to the needs of each individual will be key to improving the MS diagnosis experience.

If you’d like to dive deeper into Alice and Rachel’s insightful discussions, click on the button below to listen to the latest podcast episode now. To hear previous episodes of these collaborative podcasts, click here

Useful resources for PwMS:

myMS roadmap: a webapp designed to help PwMS, and their families and caregivers, better understand the language used to describe the disease; from diagnosis, through to starting treatment and beyond.

myMS companion: a short questionnaire designed to help PwMS to start thinking about their personal goals for the future, and the MS symptoms that they feel could be the greatest barriers to them achieving their goals.

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