Got my MS Matters mag this morning. There’s a very good article of the novelist MJ Hyland who has MS (actually her books sound great & I’m going to order one).
Doesn’t say what type of MS she has but she’s been in a trial for Alembuzumab… so I assume she’s RRMS.
Anyhoo… at one point she says (quote) "I was terrified that I might have primary progressive MS,’ Hyland says, ‘that I wouldn’t be able to write another novel.’
Now of course I do not doubt that that was her fear & like many people she is misinformed about PPMS… but wouldn’t you think the comment would have been edited out… or at least a footnote to say that PPMS is different for everyone and is not necessarily the ‘worst MS’.
Perhaps I’m being over-sensitive (& perhaps unrealistic) but seems an insensitive comment to put in an MS mag that people with PPMS read.
Comments on a postcard please…