I wish you the best of luck. However, I fail to accept that $$$$ will help find a cure. I don't believe that will ever happen. Call me a pessimist. I just don't believe. My family history is going back over 70 years - with genetic Lupus - and still, I'm no better than my grandmother was or my father. I think it's more important to spread the word so that people understand us and maybe make them more acceptable. In my case, it's just a "word" that people can only answer with "Oh." They don't have a clue as to what Lupus is and can do and how life changing it is. $$$$ will not educate the public. Words will.
You have obviously not understood what it is that I have been working so hard to try and do over the past few years.
I totally agree money will not find a cure however it goes towards helping find treatments and supporting sufferes and their families which Lupus UK support.
My aim has always been to raise awareness. I find it so frustrating that people don't understand about lupus nor do they seem to care. If it was another charity people happily get involved but for lupus they're not interested.
Its important that people get together and try and that's what I do for my mum and everyone else that has to cope with lupus.
Im not nieve enough to think money will find a cure but Im also not going to sit around and do nothing.
I wish you luck. I am the third generation in my family to be diagnosed with Lupus. after 70 years - we've not made any more strides. The drug of choice is a steroid, which causes more medical problems than any other. I support you with AWARENESS. I wrote an article about Lupus, part of which will be published by a company doing another clinical study. When I find out where the article is being published I will let you know. I sent it to many people who knew nothing about Lupus other than the term. They do now. Spread the word and hopefully education will help people to be more understanding when we have a "Lupus Day."
I'm inclined to disagree with your comments. Whilst steroids still prove to be a very effective treatment for lupus, especially for combating flares, many consultants are taking measures to spare the use of steroids to avoid the negative side-effects that so frequently come with them. The increased and improved use of immune suppressing treatments for lupus have dramatically improved survival rates, especially over the past 20-30 years.
I don't disagree for a moment that improved awareness and understanding of lupus are important - we work very hard to raise more awareness here in the UK. I think that research has improved outcomes for lupus patients though and that shouldn't be overlooked.
My Dad died in 1981. I don't think they ever treated his SLE. It hit his heart pretty badly and eventually, his kidneys. His mother died at age 48 of a cerebral hemmorage and I'm thinking that she, too, had some of the medical conditions I have - SLE, MDS, ITP, Hypothyroid, etc. I'm going back 50 years or more. My Mom used to tell me that my Dad had Lupus, but I didn't have a clue as to what she was referring to. I wish I had. I took a Shingles shot a few monbths before the SLE hit. Live virus. My doctors suspect I had been in remission most of my life, other than testing positive one time for Epstein-Barr years before. I hope your research reaches the US as well. I would venture to guess that more than likely every 2 out of 5 people - and that is a "generous assumption," haven't a clue as to what SLE is. Most people know what diabetes is. When I was growing up, we didn't have "fast food." We most likely ate a lot more healthy foods. Obesity is now prevalent among my kids' generation, and I see young children overweight. People know what cancer is. But so few know what Lupus is. With your research and communication - maybe you can help!
I think there are many people that do fantastic work trying to raise awareness! Thats exactly what im trying to do! I like to think it all helps in educating people that dont understand Lupus, I certainly try my best anyway!
If any one is close enough and wants to come along and support the event then feel free to get in touch
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Night thirst and dry mouth
Is this all there is; pain day and night and no life?
‘Living with Lupus in 2020’ Survey – LUPUS EUROPE
Night time dry mouth solved!
Leukocytes in urine, muscle twitches and night time shakes
