May 20, 2020
Why is Lupus awareness important to you? What should others know about living with lupus?
May 21, 2020
Lupus awareness is important to me because it effects so many people of my community and they don't even know what lupus is. When I was diagnosed I didn't really know what it was either and to learn that such a big percentage of those effected by this illness are black woman is appalling because I am a black woman who was diagnosed and didn't know what it was. Since my diagnosis in 2005 quite a few my family members have also been diagnosed with one of my cousins passing away. I have also lost a classmate to the disease. People need to know this is a crippling, deadly disease. That the pain caused from this effects those diagnosed every day and isn't eased with Tylenol. Most have pain and symptoms so severe work is impossible. The pain if the main thing I want to emphasize because my friends and family sometimes feel I'm overreacting or that I should be able to work. They often compare their headache pain or muscle pain to the pain I have and it can't be compared. Lupus should be treated just as serious as any other illness such as cancer and diabetes. I will continue my mission on making everyone aware lupus is real and serious. I will end with something I also say....we need a cure not sympathy!!!
July 15, 2020
Hi @ gip47! Thank you for your comment, and response. I can truly relate to your feelings of how challenging and unfair it is for our loved ones or people around us depict their pain as similar to your own, even when they are not the ones living with Lupus or any other disease or chronic condition. We hope to hear more from you, and we want to thank you as always for being a part of the community! Sending you healing hugs. If you ever have more to say or want to ask a question directly to the community, you can do so here in our question and answer section of the site: https://lupus.net/q-and-a/. -Lawrence (Lupus.net Team)
May 22, 2020
These sites are important to all
who have autoimmune issues. There are so many that cannot comprehend what we go through on a daily basis. No amount of napping or pushing through is ever going to make us better. I have had some be downright cruel in the face of my pain. It is very important to have a place where mutual knowledge and compassion are shared.
May 27, 2020
Lupus awareness is important because so many people are not aware of lupus as i was when i got diagnosed in 2004. I had no clue what it was and an aquaintance had symptoms shortly after my diagnosis and turned out she had it too and i knew from her symptoms what it was so it made her aware.
There are so many things i still learn to this day about it. That is why it is important for others to understand this disease so they are aware if they know someone or they themselves get diagnose they will know what to look for or expect. I think my mother had it but was never diagnose as she never liked to go to doctors and had always complained of joint pain writing it off as arthritis & rubbing vicks, had alot of rashes, headaches, when she got sick and we took her to the hospital for weakness and pain at age 61 she never came home , her lungs were full of fluid & phlem and her kidneys were failing 2 months later her heart just gave out. They wrote it off as congestive heart failure but we had no clue what lupus was or i wouldve suggested a test for it. Nobody else in my family had it . I now have a niece who has it aged 22 or so. Lets get this awareness out there!!!!!
May 27, 2020
Lupus awareness is important so that we understand and proactively create a life of gentleness.
July 15, 2020
Hi @Sofia22 how have you been feeling these past few weeks and months? I just wanted to drop in quickly to say hello to you, and to let you know that we are thinking about you! Many of our community members have found your comment so helpful during awareness month, and a few have reached out to me on our Facebook page to ask you if you have any advice on what a life of gentleness looks like in your own words? -Lawrence (Lupus.net Team)