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Lemtrada UK and Ireland Facebook Group

Hello

Hope all are well this lovely sunny morning?

There seems to have been some sort of admin issue with the Facebook Group “Lemtrada, alemtuzumab (campath) for treatment of MS in UK and Ireland” facebook group overnight which has resulted in this group being shut down.

For many considering, receiving or having had received lemtrada this group had been an invaluable source of info. It had c. 1000 members sharing their experiences (good and bad) of the treatment, swapping tips on different treatment centres and supporting each other through side effects. Through it I made contact with other people receiving treatment teh same week as me (at different hospitals) and the camaraderie of swapping photos of “the rash” made it a less lonely and fearful experience.

For this reason I’ve directed a number of people thinking about Lem on this site to the FB group. Thankfully, the fast thinking admins of the Group have set up a replacement page called “Lemtrada UK & Ireland” and we are all reconvening on there. So if anyone is trying to find the original (now closed) Group, please look for the group above instead.

TTFN

Katy xx

1 Like

Thank you.

Seeing my neuro on Friday and this is what we will be discussing so this is research week for me… and apart from signposting the new home for the group, you have also reminded me (a) that the group exists and (b) to join it!

Hi Angela

Good luck with your neuro on Friday. Happy researching! I’m just gearing up for Round 2. In addition to the Facebook group I found David’s Campath Journey, Shift MS (and Tracy D’s blog) and the various articles on Lem on Barts Blog good resources.

K