Today I mourn the loss of all the people whom lost their fight in the battle against Lupus and I solute all the survivors. I am sad because I am trying so hard to raise awareness in my community. I actually called the news station in the area and the guy was rude as anyone could be. I asked why nothing has been said about it on the news being Lupus Awareness Day and that the one person who could find a cure for this disease might not be aware of it yet because not even the news is talking about it. He said we are aware of Lupus. I asked then why hasn't anything been said? he said what do you want me to do ma'am? I said say something at least about it and let people know to get informed about the disease. He said ok and hung up on me. I was just floored. I wore a purple shirt to honor this day. The schools my children go to, none of the people wear even a ribbon. Not even the doctors offices. I at least have my children and my friends on facebook sporting purple to honor this for us all. My children were able to get some of there friends to actually wear purple today for awareness. One girl even put: Lupus Sucks on her shirt for me. I am sorry for venting but I am just so sad that as long as this disease has been around, so few people are even aware of it.
Lupus Foundation of America's awareness statistics:
Awareness
While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.
I didn't know it was lupus awareness day! I think there is something every day of the year now and people have become immune to hearing about one more day to be aware of something day. Hang in there!
I was diagnosed with Lupus in 2006 after 8 years of doctors and hospitals and even a psych consult. After that when I began to educate myself I realized I had plenty of the symptoms to have been diagnosed years earlier if there was more awareness and educated doctors. I agree with you completely. I ended up selling Avon because it allows me to work on my own pace. Which is not much at times. As representative I have the ability to do fund-raisers. Maybe we can put one together and try to raise awareness and make a difference even if it’s just a small step. ■■■■■■■■■■■■■■■■■■
That is so ashame. I have had some doctors say they don’t believe in it and others actually care. My old Rheumatoid doctor diagnosed me. You would think theu could actually do some type of nerve testing to actually see how the nerves react. I pray things change soon. Hugs to you too Morgan
I was never aware of Lupus until April 23,2013, the day I was diagnose with it. My response to my doctor when he shared the News with Me, I said: "What? I am sorry, if I heard and was aware of Lupus before my diagnoses I would of support it 100%. I guess doctor's don't understand and may think this lupus is not serious enough to care for the people who is living with lupus health and well being. I support Lupus sharing and explaining to all my friends and family on face book and blog it explaining in my blog what Lupus is and what it does to a human body and for those who lives with lupus on a daily basis and the flare ups. You're right this disease has to get out there and people needs to be educated about the disease. What I hate about Lupus is how it makes you look so ugly.
I know hun. I recommend a good facial moisturizer with high spf for sure. Last year my face was dark brown because of this stinking sun. I used to love it and now I can’t even be outside 5 minutes with it turning my face bright red and swelled. I stay inside as much as I can. Only go in the shade or drive if I have too. I had a skin problem for a little over a year. I would break out with odd bumps like a rash on my limbs and stomach. It itched all the time I couldn’t stop scratching it, no matter how hard I tried. I do it in my sleep and wake myself from it. I went to the Dermotolgist and they did a biopsy. Said I had Lichen Simplex. There are different kinds I am guessing. Basically it’s caused by stress and anxiety and something to do with Lupus but anyway, it started out a bumpy rash, I scratched it, it broke open, healed and came back over scar tissue. Then the pattern would repeat and I wind up with horrible scars every where. After a while, it cleared up and the scars faded. I only use Dove or Oil of Olay liquid bath soap. It has been so much better. When half my hair fell out, I cried so much. Thankfully I didn’t have to go out much but before I knew it, it was coming back and I noticed my hair getting thicker. I just had to fix it so it didn’t look so thin. There are things you can do to improve everything in time. Once they have you on medicine for a few months, I am sure you will see some better looking days dear. Only thing that has me down is the weight gain from the Prednisone. I barely eat and still gain weight. I do suggest to ask your doctor for Pilocarpine if you get dry mouth. It just makes saliva. I used to have dry mouth to for so many years. I take great care of my teeth but with dry mouth comes tooth decay. I have spent so much money on my teeth and still have more to go. Hang in there though. Life does have it’s great moments for us and you will definitely appreciate them breaks.
You know it’s sad that people are not aware of this minth being lupus month let alone knowing what lupus is. I for one didn’t even know thT there is such a thing aslupus month if i hadn’t seen it here. From where i am, when i say i have lupus, usual response would be - what is that? I am so tired of trying to explain what it is because really after explaining it to them they’d say - ahhh… so, is that like cancer? It’s so frustrating.
Yeah I was asked if it was like leukemia. Well we all know or are still learning so you will get the concern and love you need here hun. Hugs and stay blessed.
I just realized you live in the same area as my parents! pretty cool. Anyway I was wondering if you would be interested in setting up a fundraiser online? contact me if you want to give it a try. ■■■■■■■■■■■■■■■■■■
I agree. I have had this disease for 25 years. No one seems to know anymore about it now than they did when I was first diagnosed. It's very sad to see this, but I believe the way medical providers "classify" causes of deaths from lupus as a heart attack or kidney failure. Lupus is NEVER mentioned as being the cause of the heart attack or the kidney failure, so no one realizes how many people die from Lupus.
Why not call it what it is? If that person had not had Lupus do you really think their heart or kidneys would have failed? No! Their own immune system attacked those organs and caused them to fail. Until medical providers stop trying to find other causes for the symptoms and conditions that are happening from Lupus attacking the body, there will never be wide spread awareness of what Lupus does to someone.
Even on my most recent flare up, my doctor was trying to determine if I had some other illness or infection that caused my lupus to flare up. I don't. Something as simple as stress can cause a flare.
Hay! It is okay. One day there will more people to know about Lupus, and we dealing with it will be very happy . But for right now keep doing what you are doing to pass the knowledge and news about it as often as you can. Hang in there the time will come soon …Beverly L.
After that when I began to educate myself I realized I had plenty of the symptoms to have been diagnosed years earlier if there was more awareness and educated doctors. I agree with you completely. I ended up selling Avon because it allows me to work on my own pace. Which is not much at times. As representative I have the ability to do fund-raisers. Maybe we can put one together and try to raise awareness and make a difference even if it’s just a small step. 