The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. HELP US SOLVE THE CRUEL MYSTERY.
This was me 3 weeks ago, in a major hospital, I still awaken afraid to see that. In that room was my kidney doc, cardio and endocrinologist and all I got was ozempic.
Thank you so much for dedicating your life to this cause. I participated in the study and had a successful pregnancy after multiple adverse outcomes. My son brings me so much joy every day and I could not be more happy. Crossing fingers for a swift publishing process and drug approval for this syndrome. ❤
I feel like I'm losing the fight. I wasn't diagnosed with Mixed Connective Disease until after decades of problems(starting at 9 years old) including a kidney transplant. I was 60 years old .Now I'm 70 with Vasculitis flaring up because people with Lupus are prone to getting it.❤
I also have Lupus it is one of the Challenging deases you,never know what will you,be like next minute. Sad 😔 part we can't plan thing's a head 😢😢😢 And people don't Understand you.
Same here ,crawling on the staircase right now massive lupus flare up,trying to get to my bed, been lying downstairs for 6 weeks,fluid in every joint😢.
I have some of these invisible symptoms but the doc says that they have to rule out everything else before they say it’s lupas related 🤨so each doc that I have for each organ cus of lupas but it’s not…😤
I just found out yesterday I have lupus. I've had it for years because I've gotten the same face rash for like 8 years. I thought I was allergic to my safety glasses at work. Finally I went to a dermatologist and they did a skin biopsy and figured it out. I don't even know very much about it yet. I don't know exactly what kind I have either. I just took blood tests right after my dermatologist appointment, so I'm hoping I know soon. Pretty stressful and scary. Some days I don't want to work but I have a really high work ethic so I just do it anyways.
I was dx’d with lupus in 2001 and began treatment. In 2016 a new to me rheumatologist decided I was misdiagnosed and did not have lupus rather hasimotos which Endo said was BS but rheumatologist doubled down with fibromyalgia and stopped my medications and no other doc would give them because she was specialist. 1 year later when I seen Endo again he got me in right away with a different rheumatologist I seen her 2x and then had acute lupus mesenteric vasculitis and brain aneurysm within a week apart. Almost died several times, multiple surgeries and ongoing chemotherapy since then. Lupus is awful disease. Mesenteric Vasculitis is brutal and rare. This has taken so so much from my life. We need way better treatments. We need a cure.
Hello! I have lupus and hashimotos. I follow a carnivore/ketovore diet. I basically don’t eat anything inflammatory. I don’t take any medication for autoimmune. If I eat this way I have zero symptoms and no fatigue. I learned this from Dr. Ken Berry on RU-vid. Please check out his channel. ❤️
Hi! We have several ways we can support you in your lupus journey. Please reach out to a Health Education Specialist for information and resources: www.lupus.org/care-support/ask-a-health-educator
Is it not because the kidney is only affected when the flare has passed, because it is clearing, or doing it's best to clear, all the debris from the flare, that different symptoms will, or will not, be observed during flares? Different stages of a flare will cause different symptoms, and continual exposition to triggers makes it very difficult to recognise the different stages, because the different stages of different flares are all intertwined, and cause an exacerbation of them.
Hi! When a lupus flare occurs, many people will notice a return of the symptoms they have experienced before. However, some people may also develop new symptoms. Active disease is caused by inflammation in an organ (such as the kidneys) or organ system (such as the digestive system). Common symptoms of a flare are: Ongoing fever not due to an infection Painful, swollen joints An increase in fatigue Rashes Sores or ulcers in the mouth or nose General swelling in the legs Some flares happen without symptoms, so it is important to see a trained lupus doctor who regularly monitors your health. For further questions, please reach out to a Health Education Specialist: www.lupus.org/care-support/ask-a-health-educator
40 y/o white male with Lupus. It really is an invisible disease and during flares your life does grind to a halt. The. You have people who don’t really seem to believe you or be as understanding because it’s so invisible.
