The gap in research related to drug use during pregnancy means that doctors and patients may not have all the facts. Progress in this field is only possible if all stakeholders contribute – starting with all of us, along with the EUPATI Toolkit and website.
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.
There were never enough of us activists, but we seemed to be wherever a politician was making a speech or opening a new neighbourhood centre or celebrating an event, etc. We were rarely quiet and respectful. We were constantly protesting, dying in the streets, planning disruptive events. Not only were there no treatments, there was no respect towards the people with the disease. Things have changed dramatically since then.