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Why is Lupus an UNKNOWN DISEASE?
What do you say when asked, “how are you?” or “why were you absent last week?” I always gave a vague rehearsed answer like, I’m fine thank you for asking or I was a little under the weather, knowing that I was having a monster flare. I use to feel like I didn’t want to burden anyone with my illness... I mean, do the majority of people really care? I believe they do
Now I boldly say “I have a chronic disease called Lupus” if they’re interested, I give them a… read more
Answer Summary
Members rallied around a passionate call to increase lupus awareness by speaking openly about the disease instead of downplaying symptoms or... Read more
Oh !Amen ....to..... that!!!!! I have always shot straight from the hip! My brother asked me one day why I post so much about Lupus on FB and I said, because if I stay quiet then I am hurting myself and everyone else that deals with chronic illnesses! Keep up the amazing work @A MyLupusTeam Member!💜💜💜💜💜
Thanks...You guys are the best🏆 I’m just a drop in the ocean but I do have a passion for lupus awareness AND I also have a big mouth🗣 lol. But there is strength in numbers. Just imagine if 5 million lupies worldwide began speaking up and out about lupus awareness!!! We would definitely be a force to be reckoned with 💪🏼
Thanks for your questions and concerns. I sure will address it and try to get some answers.
Lupus is a minority disease. Most people who have lupus are women and or people of color. We are the ones who fall through the cracks on anything and everything. We need a spokesperson who brings our plight to the spotlight. Sydnee why not you?
Always an inspiration to hear you @A MyLupusTeam Member, and step by step I hope one day I have the courage to speak out as "loud" as you do.
I agree with @A MyLupusTeam Member it is different when your disease is almost only women and non white, and sure it is important when famous people come out and say they have lupus. I think Lupus affects so many parts of our bodies and it's still so unknown and difficult to diagnose in the medical field, it ought to be difficult too for regular people to understand.
Sydnee, you should be a Lobbyist for lupus!! I am not kidding. It's your passion i believe.
(I see the link where you got it from & all the links below basically say the same thing).
Questions I would like you to ask when you get there, (because I have a feeling you will!!! xox)
* Where is the multi millions from the 2015 funding? (where did it go?) How was it spent?
* Is all the funding just for Lupus? Or does it include all immune disorders? ( IOW, what are they doing ???)
* What labs are they working from in what parts of the world?
* If they find a cure in over in another country, how long will it take for it to be legal in this country?
I have tons more questions, you knew I would!! lol.
Have a cozy evening. xoxoxo
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