Yesterday we reported on our survey which found that only 12 per cent of people with MS felt they got all the information they needed when they were diagnosed.
The impact of this information gap can be profound. Many people who took part in our survey told us that they felt they had to do their own research on the internet. What they found was often overwhelming, sometimes misleading and certainly not tailored for them.
Today we hear from Leonie who tells us about the struggle she had to find information that could help her make sense of MS. In the end it took her almost two years to find an MS specialist nurse who could help her. In the meantime her health suffered, which meant problems at home and at work.
How did you find MS information when you were diagnosed? What did you find helpful and what did you find not so helpful? Let us know in the comments below or on social media, using the hashtag #mssense.
Over the coming days we’ll be sharing the experiences of more people living with MS and introducing a new information resource which we believe will help people find the right information at the right time for them.
The ADAMS project
25/05/2022 - 00:00
Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
Roxy's journey to diagnosis
16/05/2022 - 00:00
Roxy talks about her MS journey and the importance of sharing her own experiences to ensure that others don’t face the same challenges when receiving a diagnosis.
Lis' MS journey: one woman and her bike
04/05/2022 - 00:00
In May 2022, Lis will be heading off on her 5,000 mile cycling challenge. She shares how the idea came about and discusses why the support of the MS Trust was invaluable following a multiple sclerosis diagnosis.
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