I suffered much from SLE , hair , skin , liver, heart, kidney, blood,have few scars but now I'm free! The enemies to avoid is direct sunlight, sugar, sweet drinks or anything with sugar is the worst enemy. Carbohydrates, vegetable sprouts especially alfalfa, avoided on dangerous oils and fats, no I denied any medications, instead opted on natural remedies, no alcohol, my diet was changed into mainly herbs and vegetables. Everyday I had ginger tea, plenty of tropical fruits , apples and fish. I use baking soda and ACV as shampoo and as soap . Now, I use castor oil to rub my scars and scalp.. enjoying my thickening hair now . Hope to help someone suffering from this terrible disease.
Thank you for sharing your experiences Irma. I am glad to hear that you have had success in managing your lupus and found things that work for you. I would like to state that it is important to bear in mind that lupus presents differently in everyone and whilst some people may be able to manage their condition through adaptations in their lifestyle alone, for others treatment can be very important and life-saving. We would encourage people to discuss any complementary therapies or radical changes in their diet with their doctor first.
Thank you soo much for ur message! After years of screaming to whoever would listen; finally diagnosed; quite the dbl edged sword I must say.... scream'n muscles, extreme hair loss, fatigue, SICK SICK SICK etc... I'm sure you know! Which doctor should I seek out first, would you say, I'm supposed to see a gastro dr 1st I guess; not for wks though....any help you can give I thank God and you for...FOR SURE!
I was diagnosed with lupus in 2000 by SOCIAL security. It's been hell for 18.years. The medication I have to have from vitamin D to heart meds Cost 1629.00 a month. But social security helps me I only pay 3.35 a prescription. Which I have 11 prescriptions a month. It's horrible. I have thyroid disease The spots on my arms and face are embarrassing. One person ask me if I had aids due to the blood spots. My hair is so thin..and more coming out. The painful part is my joints...especially my knees.. Hands and elbows. Any joint is painful. Thanks for listening
Mary Rogers sorry to hear all of this Mary I wish these issues could be relieved Nothing u can do for the hair??? Or pain? And skin stuff?? I’m 10 years of constant Dry eyes really bad waking up Dry nose waking somewhat in day Dry mouth waking and when anxious or stressed Dry rashy rosCea like skin Dandruff dry scalp Heat cold issues Cold hands and feet Frequent urination Heart pounds just walking Out of breath easy Eyebrows lashes and hair I think come out to easy could be normal Dark bags And insomnia badly Anxiety depression ocd bdd eating disorder now all from this Idk what’s what anymore
thanks to @dr_ehiagwina I want to appreciate @dr_ehiagwina for giving me more life again,i was diagnose of lupus after the use of @dr_ehiagwina herbal medicine got cured, if you are infected you can contact him he also cure sickness like hepatitis :BP, :skin disease, stomach :ulcer, :Asthma romati : am, Fibroid :Acute waist pain, :Cancer of the breast, :Hynia, :Afflictions, :Chest pain :HIV HSV 1and 2 HPV Contact him on WhatsApp:+2347032130941
Thank God I don't have this. I was worried for a moment. Of all things,I was sensitive to lightbulbs, not the sun as much. My aunt has an autoimmune disorder that attacked her thyroid. Such things happen, but I feel bad for people who are cursed with lupus.
Hi Rikki. As this presentation was given at a UK event where we have a national health service, lupus patients here don't experience this situation often. I'm sorry to hear if you are currently unable to get treatment for your lupus. Have you contacted the Lupus Foundation of America to see whether they can provide any helpful information or advice for your situation?
LUPUS UK yeah, I noticed that... I have not contacted them. I will try that. I just know I'm America there is very little you can you without insurance or lots of money. I can't even work my entire body is constantly in agony and I'm too tied to do anything just of the time.
You are correct, I have no insurance and when I lost my insurance and job my primary care doctor refuse to treat me any more even though I offered to pay her in cash, after ten years I have been treating myself with exercise and plenty of vegetables. It's all trial and error.
My hair started falling out when I was 27. That was so depressing. I’m 35 now, my hair is still pretty thin on top compared to what it used to be. Really makes me feel self conscious how I wear my hair. But aside from that, the constant joint pain is by far the worst for me. I’m going through it right now. Mornings are the hardest, I can barely walk for at least an hour or 2.
I have had lupus disco oil fall. Over 50 years, I was diagnosed in my early early 30s. I am 66 years old now. I also suffer with fiber, my algebra. DD debilitating have COPD I have Arthritis. I have an aortic aneurysm. The Lopez lesions are on my back and my arms. I have a few spots on my face. I am a lupus Warrior.🎉
Wow my boyfriend has this. He can't go out in the sun. He gets blisters 3rd degree! Its painful and he can't afford medical insurance, he even works for a company that could but doesn't offer affordable health care. Its heart breaking to me. He always has a upset stomach, and has a bad heart. His joints hurt, his hearing is damaged to. Sad
So sorry to hear this. This breaks my heart. I hope he finds a solution. What we do for our daughter is give her mostly plant based foods, and use shea butter and castor oils for her skin and hair. It's helping alot
Change his diet get rid of everything that has vegetable oil get rid of any type of foods that cause inflammatory cut out breads pastas all of it there a study that shows that it will really help
I had an ANA positive for 1:80 homogenous but my double dna was negative. My symptoms are bad . I have no insurance and wish there was a test that would say for sure if I have it or not 💔
My name is pretty Washington. I live in North Carolina. I have discooit loopus. I have been having problem with finding and getting help with free drama blend. I have medicaid medicare and other insurance but cannot seem to get dermatologist to help me. With ordering this makeup, could you please help me?
A good place to start could be to order/download a free information pack. You can find this at www.lupusuk.org.uk/request-information-pack/ It is important to take your medication as prescribed by your doctor, maintain a healthy lifestyle and try to avoid/prevent triggers for the disease such as exposure to UV light and stress.
In my experience, ( I am not a doctor but a sufferer), this is caused by mites on the skin. They burrow and produce a fungus on the skin that allows them to expand the infection. Get a strong antifungal spray and dry them up, you can use lemon, garlic, salt. Use hydrogen peroxide and everywhere that turns white and bubbles, there are mites. They cover your skin and hair follicles with the fungus and when you get rid of it your hair and normal skin will come back.
By eating and living healthy clean out all vegetable oil all starch all week I’ll bread stay away from processed foods and look up healthier versions of things to eat that right there will take care of a lot and you might want to get rid of sugar as much as possible
@@harper3261 I did this clean by reducing cooking oils even olive oil butter dairy products transfats my kidneys stopped working had to look up what foods deplete my calcium levels because if it goes under 2 I need to go to the A&E for it in a drip to get it back to the right level again it has helped me a lot it is because i have a condition parathyroid glands out normally happens when having the thyroid removed or the parathyroid removed gets like a tumor or the normal reason throat cancer treatment i just have 2 vitamin d tablets every day it does really help to eat as good as you can less salt sugar limit coffee that depletes calcium so does drinking cola fizzy drinks including water tonic for gin. Flour, packaged products, ie cakes quiches pies even pasta spinach, and kale contain a lot of calcium.
Hello,my ana result was 1.320,I'm not sure if i have lupus yet but i have food sensitivities and develop hives and rashes on my face and neck,could this possibly cause a positive ana result ?
Hello. Unfortunately an ANA result by itself cannot confirm a diagnosis of lupus because it can also be positive in a number of other autoimmune conditions and a small percentage of healthy people. To confirm a diagnosis, your doctor will need to do some additional autoantibody blood tests. You can learn more about this in our article here - www.lupusuk.org.uk/getting-diagnosed/
I my opinion,, Lupus is caused by skin mites systematic Lupus is caused m By internal parasites that travel through the bloodvessels and land in the skin. In my opinion,, Topically you need a fungicide to dry them up and get rid of their ability to reproduce. Read up on parasitic detox and flush out your gut. Drink olive oil, coconut oil and eat raw garlic.
I came here to say something similar. The cough was so distracting and I wondered 3-4” into the presentation why he/she didn’t leave the room. Possibly they paid a fee for this lecture and he was trying to hold on for that reason, but nonetheless it was quite annoying
Won't using so many uva/uvb sunscreens cause vit D deficiency? Isn't vit D deficiency a major factor in SLE, as it causes disrupted calcium utilization? More importantly, do you have ANY suggestions that don't include poisoning oneself with steroids or disabling oneself via calcium deficiency?
Hi. Vitamin D deficiency is a concern for people with lupus if they need to reduce UV exposure to prevent flares. Many lupus patients have their vitamin D levels tested by their consultants and if they are deficient supplements can be prescribed.
Hi. I'm sorry to hear that you have been experiencing these symptoms and, as yet, do not have a satisfactory diagnosis. Have you had a referral to a rheumatologist to be investigated for autoimmune conditions, including lupus?
Unfortunately it can be very difficult to diagnose a disease like lupus because it presents differently in each patient and the symptoms can often mimic other conditions. Have you been to a rheumatologist? They are probably the best specialists to see for something like this. Sometimes it is best to seek a referral to a rheumatologist who has a specialist interest in lupus. Are you in the UK?
LUPUS UK I saw a rheum one said Sicca sybdrome not sjorgens Because ssa ssb negative and lip biopsy negative And then said not lupus But my sed rate was a 10 and all these symptoms for 10 years My Ana speckled 1:160 Diffuse All started after accutane drug these symptoms years ago I’m in bed 15 hours a day from lack of sleep I keep waking up and can’t fall back asleep Exhausted Eyes and nose dry when waking and mouth (mouth is better thru day) Flushing rash on face Dark swollen eyes Cold hands and feet Hair thin dandruff comes out some pieces when I wash And my eyebrows eye lashes easy too Sometimes urinate excess at night No clue anymore Never seen one who had interest in it and not in the U.K. in USA
Unfortunately blood tests are not always reliable by themselves for diagnosing these conditions as they can sometimes be seronegative. That is when it can be helpful to see a specialist. It may be worth contacting the Lupus Foundation of America to see if they can recommend any specialists near to where you live. lupus.org/
Saddened to hear you say that I am on up in age was dx age 58 have no idea how long before that mine was going on before I was dx. I know I have had times I felt like I would not see another day . However I have to believe God must still see a reason I am here . I don't go anywhere anymore, I am up usally 6 or 7 hours max a day . I have zero energy. I live in Fl its to humid for me ,so I am going to sale and find somewhere with less humity. Or I keep saying that but can't see how I can even go through my things to see what to get rid of . I am 70. My son helps me so much he does everything. I am blessed there . I hope your feeling of death will disappear and you can have some good hours every day God gives you .
I had large egg size rashes and smaller marble sized ones on my arms and legs after standing outside with just a t shirt and undies at midnight looking up at a helicopter circling the house for 30 min. It was a full moon and I wondered if that moonlight had anything to do with it? I discovered the rash in the morning. Now it flares up every few weeks and is burning and red.
I would think it is extremely unlikely to have been triggered by moonlight because the reflected light from the moon is significantly less than the sun. If you haven't already, it may be worth discussing the rashes with your doctor.
@@LUPUSUKOfficial Thanks, I did see the Dr. He got me to use steroid cream which caused them to fade but then 3 weeks later they burst out bright red and burning with others appearing in knew locations. This has repeated 4 times in last few months. Dr wanted to do biopsy for Lupus but they faded again and he wants to wait and see. I have had a bad butterfly face rash for many years.
In discussion with my friend she said that she will never make payment to any medication when I ask why? She said four consecutive times she ordered and she didn't see any, I feel for her anyway because is not easy to be disappointed but, I told her my product is arriving US tomorrow according to DR RORPOPOR HERBAL on RU-vid and it was so, not only that I got healed just within 17days of usage. And my friend who said over her dead body will she order for any medication is now asking me to give her the doctor number. May you live long to heal more souls👍
Me too, it affected my vision too and I was put on Mepacrine instead. It is far more useful to symptoms general for me but my eyesight has never properly recovered.
Can someone tell me what’s mean the treatment and therapy for lupus ? Do you take any medication yet not have exempted this Terible insupportable pain in whole body ? What about Edemas? Someone can tell me if you hit any treatment for lupus cause here I die and nobody care about me at my gp 😡😡🙈🙈🙈🙈They know how sick I’m but I don’t get t it yet treatment , but nothing ! Since last year October the pain kill my body from foots till my nake but they don’t gave me nothing and don’t give me treatment nothing nothing and I’m total depressed by this permanently pain 🙈🙈I can’t make almost nothing arround me even yo walk 🙈🙈🙈
this video is amazing great information .. i have had lupus s.l.e since i was 7 years old im 28 now so i know so much about my lupus, do you know if hair infinity should be ok to take for lupus patients ? or is it no research on it yet?
Hi reesie. This is the first I have ever heard of hair infinity. I am not aware of there being any research into its affects on people with lupus. I would recommend that you ask the advice of your consultant before starting any supplements like this, as they will be in the best position to advise you.
thanks to @dr_ehiagwina I want to appreciate @dr_ehiagwina for giving me more life again,i was diagnose of lupus after the use of @dr_ehiagwina herbal medicine got cured, if you are infected you can contact him he also cure sickness like hepatitis :BP, :skin disease, stomach :ulcer, :Asthma romati : am, Fibroid :Acute waist pain, :Cancer of the breast, :Hynia, :Afflictions, :Chest pain :HIV HSV 1and 2 HPV Contact him on WhatsApp:+2347032130941
thanks to @dr_ehiagwina I want to appreciate @dr_ehiagwina for giving me more life again,i was diagnose of lupus after the use of @dr_ehiagwina herbal medicine got cured, if you are infected you can contact him he also cure sickness like hepatitis :BP, :skin disease, stomach :ulcer, :Asthma romati : am, Fibroid :Acute waist pain, :Cancer of the breast, :Hynia, :Afflictions, :Chest pain :HIV HSV 1and 2 HPV Contact him on WhatsApp:+2347032130941
thanks to @dr_ehiagwina I want to appreciate @dr_ehiagwina for giving me more life again,i was diagnose of lupus after the use of @dr_ehiagwina herbal medicine got cured, if you are infected you can contact him he also cure sickness like hepatitis :BP, :skin disease, stomach :ulcer, :Asthma romati : am, Fibroid :Acute waist pain, :Cancer of the breast, :Hynia, :Afflictions, :Chest pain :HIV HSV 1and 2 HPV Contact him on WhatsApp:+2347032130941
Your wrong i was diagnosed with inner and outer and skin lupus. You need to do more research before you make a video. If you don't have it Then you don't need to be talking about it.
Hi Jaime, as Dr Macbeth says at the beginning of her presentation, it is possible for people to develop both cutaneous (skin) lupus and systemic lupus, although it is quite rare.
@@LUPUSUKOfficial they called me today from the Derm. And told me yes its discord. I have rash on 70% of me. Now they say go to a Romitologist (?) Cause i mentioned I cant bend my fingers easy ..my knee swells every few months and my heart pounds etc. Huhhh smh! Its a shock to get a name to what I experience so I'm just reaching out to u or others to underatand... I really do appreciate your reply. bless you 😊🙏
