Getting More Exposure for Lupus: Thanks, Kelly Simpkin, for being brave enough to go public!

[Carcrashgal]

I was delighted when my mother-in-law rang just now to tell me about a piece in the Mail on Sunday (and Mail Online): Kelly Simpkin, the beautiful, glamorous 32-year-old fashion-designer girlfriend of world famous hairdresser Nicky Clarke is telling the world about her lupus. Here's the link:

dailymail.co.uk/health/arti...

And whilst my heart goes out to Kelly - I think we'll all recognise her symptoms - I couldn't help but be thrilled that a 'celebrity' has the guts to go public. I know Lady Gaga has said there's lupus in her family, and that's a start, but every time someone in the public eye starts talking like Kelly is, it raises the profile of sufferers everywhere. I don't have to tell any of you that one of the biggest problems we all face is ignorance - not just from our friends, even our families, but especially from those in the medical profession. (For years doctors told Kelly she had arthritis. I guess we've all been there.) Diana Appleyard, the journo who wrote the piece, has done a pretty good job of actually writing about the disease. She's quoting Professor David Isenberg, academic director of rheumatology at University College Hospital and a lupus specialist, for more information - and Lupus UK have provided a little sidebar on what the disease is. So for everyone who's having problems explaining to friends and family: show them this article, where Kelly talks about being too exhausted to get out of bed (recognise that?), and Nicky having to help her dress (good man!), and having to give up first one job, then the next . . .

So here's a personal 'Thank!' you' to Kelly, for speaking out so well on something that affects us all so badly. She's hoping to do a husky sledge ride across Lapland to raise funds for Lupus UK next year. I really hope she's well enough, that she raises lost of money - and that she gets loads of publicity, because that'll help us so much.

And now I'm off to research Rituximab, the treatment she's on. Anyone know anything about it? Hang on in there, lupie chums. Kelly says she's not going to be beaten, and though it's hard to hang on to that in the middle of a flare, she's right: in the words of the late and much beloved Pete Seeger: we will overcome!

[Slowmo]

Very interesting article, thanks for posting it.

[Shann07]

Thanks for posting this, i love reading mailonline and didnt see this! I emailed this article to my husband and family to give them an insight into what my moaning and complaints are all about. Although a few scary facts re life expectency i tend to skip that part! Great to see a celebrity describing how horrendous this condition truly is, most people i know dont have a clue and dismiss my complaints as i ' look ok'. I think i will print off & pin up in work for all my colleagues who think im just a moaner lol!!

[Carcrashgal in reply to Shann07]

Exactly what I thought!

[bam1993]

Yes thank you for posting-I get the mail daily-but always skip the Sunday one....I would have missed this if you had not posted it!! I'm in work in the morning and may see if they still have yesterdays mail (we have them delivered daily at work) and if it is there I will put it under my VERY unsympathetic colleagues' nose (I think she thinks I would be ok if only I played netball and did badminton as she does!!!)-she just does not have a clue!! Thank you again for posting!!

[Carcrashgal]

It's the biggest problem I have: trying to make people understand I am not faking it or playing for sympathy when in fact I'm generally pretending to be much better than I am. Sound familiar?!

[mstr]

I think it's fab that she has 'come out' and done so by explaining the condition so eloquently. Her description probably just sounded like our experiences too. I think Rituximab is a newer bioloigical therapy. It is very expensive very treatment apparently and from what I have read (and hope is correct) only used in severe lupus when other DMARD's have failed. I look forward t the day when we can all receive this kind of treatment though.

[misty14]

Very good article, thanks for sharing it with us. Can only help our cause! Kelly is lucky she can party till midnight, I can't! X

[Mainshah]

Amazing article , was very interesting