Doctors were not very clear in their communication about MS. I didn’t understand them. It was necessary to find easy and understandable Information. I focused on patient groups, looked for sites about patients’ rights. I started to collect all that know-how and started to sort out information, the good vs the bad. I realised how important patient information is. And I noticed that there was not much understandable and useful information for patients. Patient-level information is important for good decision-making.
The power of the patient voice is phenomenal, and inspires, motivates, informs, challenges and advises us during our awareness seminars. It may sound simple – share your experience and raise awareness; however the patient voice goes far beyond story-telling. Many patients reveal the challenges they have faced getting a proper diagnosis, what taking medicines is like, how it is to be a clinical trial participant, the hurdles of getting access to medicines, the side effects of treatment, remembering to a take their medicine(s), their unmet needs and what they’d like to see from future medicines and research.