In the news now...lots of Google links...I think this one is especially good (below). Great for raising awareness of lupus ππππππππ
ππ»ππ»π voco
In the news now...lots of Google links...I think this one is especially good (below). Great for raising awareness of lupus ππππππππ
ππ»ππ»π voco
It can affect everyone regardless of wealth and celebrity status. I hate this bloody illness. Rhuemy appt tomorrow. No doubt just being fobbed off yet again.
xx
HEAR HEAR ππππ
Isn't it great this is out there & getting attention....she is a ππππ to be so OPEN ...and Forbes has gone a GRRREAT job of linking their article with loads of sterling sources of lupus info
Will be by your side in spirit tomorrow ππππ
π»π»π»π»π
Thank you for posting this very useful link coco. The more information I read the more I realise that all symptoms I have are caused by lupus. So many doctors have told me that my symptoms are caused by anxiety. I argue no, anxiety came after other symptoms. They don't seem to realise that lupus can cause anxiety. November until I'm back at rheumatology and I am hoping that something shows up so I can get the help I need.
An excellent article Coco!
A least folk seem to be much more aware when they know a celebrity who has the disease.
Many of my relations at last understand a bit about it all now ,from hearing more on internet and Tv.
Thanks again for those super links! Xx
Thank you coco, it's a fab article ...saved to book marks βοΈ
Great article and links. Afraid I haven't heard of this lady ( must get out more) but this is wonderful stuff.
Yes GREAT news - it raised the profile of Lupus and helps with research funding. I see there has been some positive outcomes with a two pronged treatment in rats. They fully recovered using mexatrase (?) and a new drug in combination. Hopefully starting human trials in 12 to 18 months. fingers crossed.
I just have to be a bit negative about Selena Gomez. She actually broke the news of her Lupus diagnoses last October. Not when she was on the long hiatus not even when she was feeling better and recording her album. She waited until the release of her new album. Using her platform to promote awareness? No, using her platform to promote her album. The worst part about it, in the original article, she states, "I was diagnosed with lupus, and Iβve been through chemotherapy. Thatβs what my break was really about." Ending her comments there created this assumption that Lupus could be cured with chemotherapy. My niece, who is the same age as Ms. Gomez has been very sick from Lupus and received countless messages of "why don't you get chemotherapy like Selena Gomez? She's better now. Why are you still sick?" Then you throw in the fact that she does commercials for Pantene showing her beautiful flowing hair. It's another slap in the face to those suffering. We all know what Lupus does to beautiful hair. Throw in methotrexate and ...my niece is wearing wigs her hair is so bad. That article just made her very angry and sad and I feel the same way.
Rant over
Am vvvv much feeling for your niece, and I wish my relatives had stepped up for me the way you are for her: well said ππππ βΌοΈ I had similar concerns when the Gomez news came out last autumn
Because Lupus has as many faces as individuals, getting a message out to raise public awareness of lupus is a tough job. As a lupus patient you yourself know this all too well...and even better cause of your niece's lupus. Even though they have witnessed my decades of miserable illnes & debilitation, some members of my family have said to me: lupus is "what everyone has", implying I'm just a weak hypochondriac...despite all the time & attention the health system is giving me, + the obvious visual symptoms + the seriousness of the treatments I've received, both emergency & maintenance. People really can be & are extraordinarily cruel and obtuse to many of us. The love & support you're giving is πππππβΌοΈ
Selena & those close to her have been & are getting to know her version of lupus. We all know that is a process, which takes a lot of time learning & effort on the part of all involved. Who knows how she'll handle both her own lupus & sharing her version of lupus with others ongoing. I hope she continues to publicise aspects of her condition & treatment: this evolution can mean lupus continues to be in the news if Selena remains in the public eye. This way lupus stays in the public eye in a way it seldom has been. We know there is no cure for lupus, so she'll always be coping with it, but most of the world doesn't know this.
I''m hoping this could evolve much in the way news re the tennis star Williams sister Venus's sjogrens has over recent years: at first, the news implied Venus had sjogrens under control etc...but as time passed, more of the world learned sjogrens would always be a big issue for her. Thanks to her public profile, the world now knows a bit about sjogrens ongoing...my secondary Sjogren's is dreadful and no one around me had ever heard of it for years...but now, thanks to Venus's publicity machine, more people know something about sjogrens, and seem to appreciate its incurable, ghastly character....I get much more respect now for that aspect of my incurable multisystem illnesses
My journey with lupus has gone through many faces since my diagnosis as an infant. For the past few years in my 60s , my hair has thrived since I started on daily mycophenolate as part of my daily Lupus meds cocktail. Am vvvv much hoping your niece's version of this desperately dreadful condition responds well enough to her evolving treatment plan so that both her beautiful hair & the rest of her beautiful self can regrow & so that she can feel she is coming closer to thriving again
Sending you & your niece love & best wishes
π»ππ»ππ» coco