LUPUS UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. We presently have over 5500 Members and a number of Regional Groups around the UK who arrange medical talks, publish local newsletters, set up local occasions and organise fundraising events. LUPUS UK also produces an informative national magazine with lupus articles, letters, reports, and photographs, and operates a strong Grant Programme for research purposes and welfare. To find out more, please visit www.lupusuk.org.uk
UC had my erning down as23,000year its only 13,000 only part time so they didn't help now they know there mistake shold i get back pay S my Rent is 14,00 a month
I just wanted to say thank you so much for taking your time and ❤️ and everything you continue to do ❣️ i have lupus ive been going through hell 😢 Stress, depression make me very 3 x sick severe fatigue 😞
Hi Beth, I´m from Germany and I´ve been diagnosed with SLE in 08/02, ten years after it´d broken out. Thanks to you, Khiry and Maryann for sharing your diagnosis experiences with us other patients. My attitude is "Who fights MAY lose, who does not fight HAS already lost", this I tell you as longtime survivor. My bloodwork´s checked every 6 months, and thank God I do not have any kidney problems so far, the only value that´s too high from my longtime meds is my Gamma GT liver value. I have some secondary diseases like Raynaud´s, Scleroderma, Sjögrens. And also Asthma that has nothing to do with the Lupus and Osteoporosis from the cortisone that´d been very high-dosed in the first 2 years after the diagnose. I hope you have the same attitude as I do and wish you the very best. By the way, I´m 53 years old now.
That video I understand it, but that’s really nothing people with lupus. That’s really nothing. The people was learning disability. It’s something it’s horrible stressful I mean people get tired people get pain no matter what you get older you get hurt your bones hurt. It’s life you get tired that’s what happens. Most people lose hair. Some people might have that for jeans and also, if you’re losing your strength, maybe you’re overworking yourself up medicine to hear that people with learning disability there’s no medicine and there’s no cure people who can’t with learning disability. They can’t hard time reading math doing some driving and getting some more jobs but really lupus and also people with rashes. I mean to me it’s really nothing I’d rather have that than on a learning disability. I really rather have lupus than my disability. I actually have that problem. I’ve been diagnosed it when I was a baby, but lupus is really nothing to me. People should take notes about people with learning disability too people out there are suffering, and there’s surprise that it’s not aware of that but people are more aware of lupus. It’s really nothing to me. You can read you can you can you can get different jobs to me that is normalhonestly it’s nothing to me
How many people are here under immense stress that snapped when it said "manage stress' while watching one of the most stressful videos of their lives?
I know its going to be a rough day when the wave of crushing exhaustion hits right before noon, and the pain feels like knives being shoved under my kneecaps, my arms feel like burning pulled pork, and the top of my head hit with a hammer. Its like hellraiser levels of torture
The d w p say that l don't need p I p even though in 2012 when someone shone a lazer torch into my right eye and l suffered a detached retina!!! They gave me 0 0 0 saying that in my daily living , such as travel and planning my journeys that l didn't need ANY help or assistance. So l don't understand why l have to take a taxi and having to getting the driver to have to assist me at the beginning and end of my journey. Also not being able to see l can't prepare and cook a meal unaided. Even though in trying to chop or peel vegetables l cut myself. The d w p tell me l need absolutely NO help or assistance assistance. The fact is that l am blind in my right eye and struggle to see and cope every day
What’s so freaky to me about this video and my own diagnosis is that 10 years ago or so, when the symptoms started to get aggressive and I had no idea what was going on, I would doodle and art journal this wolf demon that no one could see but me and he was constantly torturing me…then…10 years later diagnosed with Lupus…like he was sitting there all smug and happy about it, trolling me that he was indeed, truly there. 🐺
I’ve been on the couch for two days in and out of sleep. I feel like I could hibernate for a month. People really don’t understand unless they’re one of us.
To many of us have this awful dreadful lupus. I've been struggling with it for so many years & now. I'm now in end stage kidney failure. I was told by doctors that I would never see my 30th birthday, but in a couple weeks, I'll be 66. I know I don't have a lot of time left. I've been recessatated 7 times, but there won't be an 8th. I've placed my life in God's hands, so I'm not worried about where I'm spending eternity. I don't know what else to say except I pray everyone with lupus will find peace. God's blessings to all!
Is there anyone who will help me? My ANA is negative, anti ds dna, crp, protein in urine is all normal.creatinine in blood also normal.but i have anemia,platelets and WBC are normal.Hb is 10.66.but i have low grade fever,knee pain(not so much high), i take calcium for 2 months but it is not totally cured.But the pain is little bit lessen.but recently i also feel the pain on my left hand joint.i have no rashes in my body,no sunlight related problem.But when it is winter i can see red spot on my leg,in summer the red spot becomes vanished.Doctor said i have no lupus.but I'm little bit worried about that.My ESR level is 33.😢😢😢
My husband got a standard rate for daily living as he got 11 points. I am wondering if he could get a higher rate from back date as he also got mental health issues from last year.
thankyou for showing other people what it is really like. im literally sat in my bed in tears crying because everyone around me thinks im lazy or unmotivated whenever i have trouble getting up for school in the morning - missing days here and there. it is just so fucking frustrating sometimes feeling so extremely tired all the time - especially in the morning. like i cant do stuff as quick as my classmates. it doesn't work like that , i dont work like that. and im learning to accept and love myself for it.
Hi, there. Louise message for you, my name's Tasha, I would be grateful if you can send me your email so I could contact you about disability benefits as I would like to get some help as I am dyslexic and many other complicated issues I have.
I was diagnosed when I was 15; I'm 41 now. I've lived with Lupus longer than I have without and have grown accustomed to masking how I'm actually feeling. As a bloke, it's difficult to express my mindset without being questioned, so I just 'man up' and get on with it. Recently it's been getting worse and I'm finding it harder to mask. Because throughout my life I've actively tried to hide the severity of my condition, people are, understandably, less sympathetic to how I'm actually feeling... Maybe I need to stop pretending and laughing things off... Although that's the only coping method I can think of that stops me from being depressed. I'll figure it out. Thanks to anyone who read my essay lol hope your Lupus journey treats you well.
