I have a friend who has a grilfriend that has lupus as the way he told me random blood spots would appear in scares etc that was a long time ago i wonder how they are doing i came here to understand it more
People I'm not spamming or joking or trying to con you, I'm just spreading the good news. There's a monk in UK that is curing people of this disease and you don't have to pay a dime,you only give a donation if you feel he has healed you, that's the truth,
he has healed people I know! that's why I'm spreading this message!no lies,no junk and its free! no healing don't give a donation!please help me spread the good news!LOOK HIM UP HERE.
@rockcityaudio - Thanks for having the courage to put this on here. I'm going to give the monk a go. I studied Buddhism for several years but got off track. Maybe it's time I got back on again. Thanks for the reminder.
My mother in law was diagnosed with lupus 1 yr ago. However, we don't know if it was brought on by the drugs she's taking to manage labile hypertension. Anyway, she's become very fragile and can't eat anything cept peanut butter. She's keeping a positvie attitude and we hope that she get to the point where she can manage without the threat of fainting or falling down.
I was diagnosed with lupus when I was 10 :( and have been in and put of the hospital 5-6 more times and I'm having to go throughout kemo and I.v treatments every 2 weeks and I have to take 6 different medicines and lupus really does change your life
i am awaiting test results after misdiagnosis after misdiagnosis and horrible pain and i lost a job due to the misdiagnosis, I am soo tired and my back hurts so bad and loss of hair, inside mouth sores at times fatigue and like kidney pain and low back pain. I was told no children before and i am blessed with a seven yr old. I have walked this path and now am waiting diagnosis would anyone be willing to talk with me one on one. I am just looking for answers. and not give up. never give up
I have had SLE for 2 years now. I am a 24 year old mother of a 2 year old son. I hope that there will be a cure one day and I want to feel healthy again. Did that lady get cured from stem cell transplant????
im 14 and a twin and me and my sister were diagnosed with lupus she at age 11 me at age 12 i lost all the hair on the top of my head and lost a rapid amount of weight i had 2 be homeschooled in the 6th grade and my sisters kidneys failed had 2 be in the hopistal 4 weeks got out had a seizure went back 2 the hospital 4 much longer and now has dialysis every mon tues thurs and sat had to be homeschooled as well but now were both in school and hangin in there with love and support from family, GOD
I'm so sad to read about your problems with lupus. PLEASE, if you want to know how we defeated lupus, even though the doctors said it wasn't. Another friend of mine had lupus for 7 years, she was so sick...write to me and I can tell you how to get a cure for your illness, they're not chemicals. It's nanobiotechnology. My email es: maggie_rodrig27@hotmail.com
BLESSINGS & PROSPERITY TO ALL EFFECTED BY LUPUS & THIER FAMILIES. THIERS HOPE!!! STAY FAITHFUL &OPTIMISTIC IT REALLY MAKES A DIFFERENCE LOOK FOR AND TOWARD ALL THE MANY BLESSINDS LIFE BRINGS!!!
Im 13 years old, and was recientally diagnosed with lupus and fibromyalgia. I havent been to school in a month, and my friends get really worried when i dont reply. I havent been put on very many medications, but the ones im on arnt doing anything. I have high hopes, and good support, but at the same time, its not fun. I cant have children, and that was something i was looking forward to in the future. I want to die sometimes from the pain, its hell. People with lupus, hang on!
I recently met a young woman with lupus... I didn't quite understand what it was or how it affects people but after watching this, I have so much more respect for how positive and joyful she is. Her kidneys are in a lot of trouble but she remains so optimistic. The lucky who aren't affected by major illnesses could learn so much from people like this. I'm truly considering if I'd be the right tissue and blood match for my friend so she could have one of my kidneys. God bless everyone here xx
I have also had 2 strokes, but I try to stay positive. I just want people to be educated & pray that none of my friends or family have to go through this. My sister passed away with breast cancer, but she also had Lupus which I am convinced made it harder for her to fight the cancer, since it pretty much wipes out your immune system
@sascha2674 it took them years to funally diagnose me with Lupus. Why don't you start a support group? It would help so many to not feel so alone. I know when I was first diagnosed, I felt like I was the only one in the world who had this disease. Bless you & much luck to you
I was diagnosed with Lupus in the early 90's, it is so painful. I have had kidney failure, liver failure & so much joint pain & swelling. Now it has affected my heart & my pancreas. One of the worse things I go throughis the misunderstanding when people say, but you don't look sick, I have been called a hypochondriac, a liar, a drug seeker, & that was by medical professionals. I had to give up my, I am a surgical technologist & can no longer do the strenuous work, It is hard & scary
How negative can this clip be?! Its like saying Lupus is a Death Sentence when it is NOT! I have 4 kids, a loving husband, run several businesses, a great LIFE and happy and loving living to the max and yes I do have Lupus and no I don't let it control my life, positive minds people and many things you can do to live WELL, healthy diet, alternative and natural remedies are a choice with western medicine, Vitamin C (pure), Glucosamin & Fish Oil Capsules help pain, empower the mind, Love LIFE!
@poker7499 , I read recently, that before modern Steroids and Plaquenil they gave you about four years. Its sucks taking the drugs, but I am so glad I am still here and can get out of bed in the morning, before I was diagnosed and on the right drugs I couldn't, the pain is undescribable.
@poker7499 The more you deny lupus the worse off you are. The meds help to protect your organs from lupus. You will suffer a great deal of pain and the lupus will flare up until you end up in the ER with damage that could have been avoided.
I had a friend who's mom had lupus. When I heard about it I had no idea what it was. I ended up looking up 1000 faces and saw it explained everything I've been going through. I may be obsessed with finding the diagnosis to my problem, but I think I'm just too afraid of finding the diagnosis on this. Hopefully SCIENCE comes through and finds a cure.
Salve a Tutti Chi puo' Aiutarmi, o Mia Figlia di anni 35 a Il lupus 2004 Qui non Riescono a Tamponare la sua malattia ora Siamo Costreti a Fagli Fare Una trafusione di Sangue ogni 2 Settimane xke non riescono a tamponare La malattia al POLICLINICO 2 DI NAPOLI ITALIA Siamo Disperati i Valori sono Sempre bassi I cobli rossi bassi il rene non funziona bene chi puo' aiutarci Siamo Distrutti Grazie non capisco la lingua americana solo ita.
PPL ITS NOT TRUE U CANT HAVE BABIES...U CAN!!!!!!!!!!!!!!!!!!! U JUST HAVE TO BEE MORE ORGANISE....SO PLEASE DONT SAY U CANT HAVE CHILDREN COUS PPL READING THIS GET DEVASTATED...AND ITS NOT EVEN TRUE
@huska86 that depends on the case. those with moderate to severe can have premature menopause and those in chemo can affect their ovaries, etc,... . some can have kids other's don't, even those who can OBLIGATORY need medical attention or the baby or the woman could face some trouble.
Thanks for posting this :) I got very sick with my lungs and heart after I had my triplets. Then I could barely move from swollen and painful joints and I had severe fatigue. I went to the Dr. and he ran a LOT of tests then he sat me down and told me I had lupus. I was shocked because my husband has lupus. Now I just pray for my children.
I dont have lupus but my friend does and i cant lose her she has done so much for me. i cant thank her enough for all that shes done for me.i cant help her i feel so useless. shes sufering and i cant do anything to help her. the only way God can hurt me is by hurting the ones i care about. he wont hurt me but he;ll hurt my loved ones.it makes me so sad im sorry for what you guys have to go through there will be a CURE someday i hope every1 with Lupus gets well and and lives long God bles u al;
GOD PROMISED TO HEAL ME i was diagnosed with lupus IV nephritis @ the beautiful age of 21, it was very aggressive. god blessed me with a wonderful supportive parents, family, friends,group of doctors and sent a great man into my life. god sent through this man that i was going to be okay to, to not be scared and that he (god)was with me. under went kemo theropy and 1year before treatment was over i was healed like he promised stop treatment and now pregnant with my frist child. god is true
After suffering for more than a decade, & losing so much of my former self/life, I finally received this diagnosis very recently. Thanks for posting the video.
My g-grandmother was native american & she died of Lupus. I have been dx with Fibromyalgia, OA, Interstitial Cystitis, Irritable bowel. I have suffered for over 20 yrs. I finally can no longer work. I am now almost homebound due to such severe joint pain & muscle pain. The docs say my blood work doesn't show Lupus, but some doctors have said it is a possibility. They never direct me on this. Its possibly because I no longer have insurance. I am now losing my hair and terrible dry eyes.
Good 4 u shayluvsmj! Don't let lupus take over,I was diagnosed in 1987 eye was 9yrs and after that 8 days before my 11th b-day eye had a stroke. Im 32 now and believe me lupus bites lol.
I was diagnosed with SLE when i was 13. Im 17 now and i am fortunate to have lived this long along with other medical problems. I hate lupus but what dont kill you makes you stronger. I was able 2 graduate hs with good grades.
I miss Dr. Manzi so much. I believe because of her, Dr. Domsic and her staff I am still doing well. I have good care at UNC-Chapel Hill but Dr Manzi is my hero. Everything she says is true. Miss you!
@jbdream3 that may be but i believe that the problem here is diagnosis on the part of not only the drs but also the patients. Men are STILL supposed to be "strong"
Thank you for posting your video. I'm experienced a painful condition for over a year and a half and the doctor was not sure what I have. Some days are more challenging than others, but I always try to remind myself that others are going through much harder challenges than mine. No one needs to look far to see someone else who is going through more and at the same time a good example of a positive good sport in life and an example to everyone.
My father has lupus. He has been suffering for over 13 years. He is caucasian and it's very rare for that. I pray for everyone who is affected by this horrible disease.
my girlfriend was recently diagnosed with Lupus. She's only 19, and I hope and pray that she'll be okay. I'm so worried about her and if you're reading this, Carmen, I love you and hope you get better.
yes you can have lupus and it may never show in a test...go to a lupus awarness site to find out about what you need to know..support me in my fight for treatment.Rachel Hayes facebook..please support
Can you still have Lupus and test negative? I also have all the symptoms, including the facial rash across the nose and cheeks, ulcers in the mouth and stuff, and my pregnancies were very dangerous. I had Preeclampia (sorry can't spell it) with both pregnancies, and I had a missed miscarriage. I suffer with terrible joint pain, some muscle pain, and extreme fatigue, and a long list of other problems.
@Mojosfire my knowledge says that there is no one specific test for Lupus, there is the ANA but as far as i have read personally thats not reliable, a cousin of mine died of Lupus and tested negative until AFTER her death, .- it was the autopsy that gave the cause of death apparently.
so if if anything else is ruled out, sounds very possible FROM MY KNOWLEDGE ON THE TOPIC - try at least reading more about what lifestyle changes you need to make and test it out, good luck
omg im will add all that suffer to this in my prayers, i just found out a close friend has this, and i knew nothin about it, she has to have a kidney removed, im afraid for her!
Both my daughters' have SLE.....My youngest has had to undergo the chemo treatments for her kidneys...My oldest nearly died in August 2009....she has heart damage as a result and both have permanent kidney damage.....
Great video!!! I have lupus too. I made a personal choice and switch my diet to vegan diet to see if it helps. I've only taken Prednisone (60mg/day) for 12 days and my doctor is already tapering it down for me. Just for your information.
i was diagnosed with lupus at the age of 7 (luckily). i was in & out of the hospital with complications, such as thrombocytopenia (low platelet count & extreme bleeding). i didnt get to enjoy life until i turned 12 & went into remission... 3 years later i had a flare up and my SLE advanced to lupus nephritis. im 20 now and in college and working on my degree in biochem. i'm losing hair and i have joint pain everyday, but Lupus doesn't have to hold me down. i really do pray for a cure one day!
I just found out that my wife have lupus, my God I'm all here by my self thinking of this and geting all the info I can gather together with tears on my eyes. Sorry I just had to take this out of my chest a bit please someone help I just found out today.
I am a 19 yo. I have been diagnosed with a blood mutation, meaning bloodclots. I had DVT and PE and theres a possiblity I also have Lupus. I also have Juvinile Rheumatoid arthritis. I...Im very scared of Lupus. I hope theres a cure because Ive had enough of pain already...
Hi, my name is J. Daniel Bracamontes and i have LUPUS since like 8 months, i feel happy for a fundation like this, trying to help people with LUPUS, I want to Know more about Lupus coz here in mexico theres not alot of information... Sorry but my english is not hat good...
my heart goes out to all lupus patients young and old i was just diagnosed with this disease last april ! i wish you all health love and happiness ALWAYS!!<3
I lost my FATHER to this disease. It really aggravates me that you always focus on the woman aspect. Maybe it does affect more women but let me tell you from personal experience it's just as vital an issue if you are male. I wish you would focus on the men a little more. It really is kind of insulting to be constantly made to feel like there is something extra wrong with you because you have a "womans" disease.
I got diagnosed with lupus when I was 4 years old. I just turned 21 yesterday. It's been a part of my life as long as I can remember, so it's kind of a natural part of life or me. But sometimes I get so scared that I won't be able to live the life I want. And it's so hard to explain to friends, however close they are, how it feels to be a 20-yr old with the body of an 85-yr old...
Please find a cure for lupus, donate, do anything, my sister is an angel and she doesn't deserve this she's such a good person, she doesn't deserve to go through what she is going through
i have just found out my sister in law has lupus,barely 2 hours ago. someone please help me help her. what can i do to make things better for her....omg i didn't know it was this bad! right now she is in alot of pain WHAT DO I DO?
I was diagnosed when I was 16,and I will be 50 yrs. old in Nov. I have been on steroids off and on the whole time. I couldn't dress myself or write my own name in the beginning. Despite the odds, after 11 yrs. of trying,I gave birth to a beautiful daughter 17 yrs. ago. She and my wonderful husband keep me going. I developed AVN of both knees, I have had 5 knee sugeries. The fatigue and the pain is the most horrible part because I'm allergic to all pain meds. Never give Up!!!
I think this is a great video but there is a really cute book that i read and it's called Lupus Love and it helps explain the disease to kids whos parents have lupus its really really cute .. if you know anyone that has kids and has lupus you should reccommend the book to them
i have lupus a couple of months ago i started to have joint pain. at first dey said it was drug induced and i beilive and pray dat it is. acne medicine induced my lupus becuase no one in my family has this. im scared but im hopeful im on steroids and i think the drugs demselves are making me go insane. i was perfecttly healthy before never missed a pieriod never even gotten sick. am i going to continue to get more symtoms like liver heart lung problems?
my mother has lupus, and it seemed to start off as her joints, and back, and moved to her skin. It affects everyone very differently. Keep taking your medications. There are different medications and treatments. My mother found a good medication and is doing very well now.
steroids can cause you to feel strange. The symtoms are organs involved with lupus usually are there when they discover you have lupus. Have your primary doctor to refer you to heart, lung and kidney doctors to be checked out. I found it was my kidney and have had good care. keep your head up, you are not alone.
My mom has Lupus. My parents didn't tell me or my siblings until we were in our teens. They didn't want us to worry about her. I love them for this. My dad has Melanoma, so my Mom is the only one working to support us. She is working, and spending time helping with my dad. She works as hard as i believe one can and because of this she doesn't worry enough about herself. Just tonight she is in the hospital because her lung was hurting and it was hard to breathe. I love her so much
@yoyad My friend died with metastatic malignant melanoma dec 20th 2009. My fiancee has a very dear friend whom he works with who has kidney faliure suffering lupus, he is in hospital at present so nobody knows the prognosis. He has a child with spina-bifida. Its a very cruel world and i wish everyone to be well and enjoy life. I wish u well and hope that everyone is healthy love julia xxxx
My mom has had Lupus since she was young. She had me and my brother and sister. Both her and my Dad didn't want us to have to worry about it so they didn't tell us until we were in our teens. I love them for that. There were many times when she was sick and/or in the hospital that were very scary. She works so hard to support me and my family and there are so many times that I am ignorant to that fact. Especially now since my dad has Melanoma and she is trying to work, while being with my dad.
i don't now i see something looks like a black thing and on the other hand i am a little bit of white (hope not i have vittigo or what the name is)please god let me don't be white! i love my color and i don't wanna have vittigo!
my dr just told me today i probably have it. im waiting on blood work. im really scared. i didnt know it was life threatning. i have 3 kids to live for. but im always in pain. its real bad in my back & chest. maybe i dont want to know. im too young for this.
My mother had lupus. We didn't know until she died because she never was diagnosed with it until her death when her lungs collapsed after surgery and she passed away. I never knew what this was or what could have happened. My mother didn't believe going to the doctors. She had rheumatoid Arthritis all her adult life.
I was diogonised with lupus last year 2008 its very painful .But i have tried to cope even though attimes its very difficult.But i comfort my self by trying to forget everything.
All I can say is that the treatment can help you but first of all you must help yourself. You dont have to listen to what people say about how horrible is to have lupus, you only have to think that you will be ok no matter what . I did that and I had no side effects from cyclophosphamide and corticosteroids , I only got a little fatter now I am back at my normal weight and all my blood tests are ok even if when I started all my tests were a COMPLETE disaster.I wish you all good health.Bye :).
My dear wife is 35 and was diagnosed with lupus 4 years ago. Two years ago she was re evaluated and the diagnosis was changed to Bechet Syndrome. Last week it was changed back to lupus. I'm also very scared that someday it would be fatal and refrain of thinking about that reality. We live life one day at a time. Doctors are in the dark about this disease and I believe a lot of research must be done on this subject so come on you big pharmaceutical companies. Put your money into this.
hi i am 15 years old and i was just diagnosed with lupus RA. so tht measn i have lupus and rheumatoid arthritis. i know lupus is a very scary disease and could be fatal. but we cannot let it take over us! i am trying with all my heart to live a life with no pain! good luck to all of you
Stress and fear are the greatest enemy of this disease. Lupus is unpredictable and can be debilitating -- but most of us do not die. We learn to live with it. We find hope and ways to cope. For me, a deep faith in God and prayer have kept me going. Good information, healthy choices and a positive mental attitude help me actually live day to day.
Both my mom and I have Lupus. I was diagnosed when I was 15. I'm 20 now. Everything that the doctor said in the end of the video in regards to Lupus patients' fears is true for me. Those are all the things I worry about... as much as I'm in pain, I still and very thankful for life.
I was recently diagnosed with Lupus but my doc thinks I've been living with Lupus since I was 15 and I am also 20 yrs old now. I lost my one and only son on March 25, 2009 when I was only 26 weeks pregnant with him because of the Lupus, he was stillborn. It's so devastating to know that any pregnancy for women with Lupus will always be high-risk...
Hasn't any one checked the coloration between childbirth and Lupus? My mother had twins (baby's 4 and 5) And THEN she was diagnosed with Lupus.. Why hasn't anyone looked into this? Why is there no information out there about this?
Childbirth is often a trigger for a lupus flare. It is not the cause, but exacerbates the disease that might have been lying dormant. There has been quite a bit on research on this.
They think it's hereditary but they don't know the cause. No one really knows.
But I have come to realize that lupus is like a bully that likes to pick on the weak therefore control the bully and the bully will go back into hiding.
mmmBRIAAN: That's like saying AIDS is a bully...and you know no matter what It will never go away. I had a friend that had lupus...believe me when I say she fought HARD to live...but it just wasn't enough...she passed away last year.
The connection is there. My nephrologist told me the two risk factors that made him order an ANA test were being a woman and being in my third pregnancy. I believe the highest risk group consist of women in their child bearing years.
@PuppiesandSunshine Supposedly many people get a rash on their face in the form of a wolf mask, sometimes represented as a butterfly as well. That I think is the reason but please correct me if I'm wrong.
My mother has Lupus. It took two years for the doctors to diagnose her. It attacked her joints in her spine and her hips. For the longest time she couldn't get out of bed, and was on high doses of prednisone. She had massive skin outbreaks, and used hardly be able to eat because her digestive tract seemed involved, and she would go anaphalitic on many foods.
She is getting her disease under control through anti-malarial drugs. She is doing well now.
This is a great video. I battle my lupus everyday, as well as mixed connective tissue disease and fibromyalgia. Aside from the pain, weakness, fatigue, etc...I get so tired of other people having an opinion about my disease. They do not treat SLE as a serious disease, and often assume that because I am young that I am lazy or a hypochondriac. I was diagnosed 8 years ago & have been tested repeatedly & treated as much as they can. It's a frustrating disease. But I always have hope.
im 13 and i was dianosed with Lupus 2 months ago only my closest of riends know and i hate it now that i told one of them he could bareley look at me for weeks after i told hima nd my other firend broke down when i told he my lupus affects my kidneys and my nervous system i have flreups loads and i have bad days at lest 3 times a week i hate it
Hi fihaprincess...I'm so sorry to hear of your story. I was diagnosed in 2003, so I can def relate to how you feel about telling those aroundd you. I hope all is well with you ;)
Hello, I was just wondering how your bad days are, and what they might consist of. My girlfriend has lupus and I'm trying to learn as much as I can about it.
I think the most difficult part of this is trying to get a diagnosis. Even though it's such a prevalent disease so many doctors seem unable to accurately diagnose it. Currently my doctor is waiting solely for my ANA to tip over into abnormal to verify all of the physical complaints. I joke that perhaps I'll turn up dead in the meantime and they'll actually know what's wrong. But, really... it's not a joke... since Lupus is such a variable disease...
I have Lupus, no insurance and do as much as i can... I also have Fibromyalgia and hashimotosthyroiditis... Recently i have been attacked by what im thinking mosqutos but my legs and arms are covered in lesion looking sores, my eye is infected i have chest pain on the left side... I have panic attacks, cant sleep, my heart races wildly.. I have constant heartburn and everytime i eat i throw up. Please help me, chat lines anything.
roxy i was dx w/lupus in 2001. i understand what your going through. there is two online groups i joined. try typing in "lupies" and md junction on yahoo or google search. i hope going to these sites will help you. the folks there all have lupus and connective/immune diseases which you can ask them questions pertaining to your symptoms. god bless.
im 9 and i have lupus and i just goy it my mom said that we have a better way of getting it to be gone its hard for me to breath im scared will i die?
No, you won't. But you have to be really careful with your health from now on. You might not be able to have as much "FUN" as other kids do when you grow up because you must have a very healthy life. So no fires or too much pizza. You need to ensure to have a good night sleep everyday and to do more excises...etc.
Hi: Great video I was diagnose with Lupus at the age of 13 in 1990. I received kimo because my kidneys were damage but in 1992 everything was fine and since then I've been in remition and have two beautiful kids. Is not easy having Lupus.
It was hard for me to adapt to the disease, and I do know of people having children, but they are at a higher risk for pregnancy. You need to really consult your physician.
I found out that I had lupus back in '05. I went into renal failure, but luckily, since I was in nursing school at the time, I knew the signs and symptoms of high blood pressure (which can be caused by the kidneys as well), so I knew to go to the doctor. I haven't had a flare up since then. I had to be put on chemotherapy and steroids. Lupus has many different signs and symptoms though. You can find lupus support groups online....cont.
My grandma died from lupus not to long ago. I'm 19 and just found out I have it too :(.
CaptainKookieCrums 2 weeks ago
I just made my own video about my Lupus. Please check it out n let me know what you guys think! <3
betaroars 1 month ago
I am 12 and my mom suffers from lupus.
Boricua121999 1 month ago
I have a friend who has a grilfriend that has lupus as the way he told me random blood spots would appear in scares etc that was a long time ago i wonder how they are doing i came here to understand it more
codenameshade 5 months ago
My mother has Lupus, but she has a very unique form.. Its been in remission since they found it, just before I was born... =/
luther507 5 months ago
People I'm not spamming or joking or trying to con you, I'm just spreading the good news. There's a monk in UK that is curing people of this disease and you don't have to pay a dime,you only give a donation if you feel he has healed you, that's the truth,
he has healed people I know! that's why I'm spreading this message!no lies,no junk and its free! no healing don't give a donation!please help me spread the good news!LOOK HIM UP HERE.
bodybuddha.co.uk
rockcityaudio 6 months ago
@rockcityaudio - Thanks for having the courage to put this on here. I'm going to give the monk a go. I studied Buddhism for several years but got off track. Maybe it's time I got back on again. Thanks for the reminder.
Grace3753 4 months ago
@rockcityaudio Thank you for spreading the news. Acupuntrists doctors are also amazing at finding the root cause and bringing the body into balance.
biosphere22 3 months ago
My mother in law was diagnosed with lupus 1 yr ago. However, we don't know if it was brought on by the drugs she's taking to manage labile hypertension. Anyway, she's become very fragile and can't eat anything cept peanut butter. She's keeping a positvie attitude and we hope that she get to the point where she can manage without the threat of fainting or falling down.
chillichomper 6 months ago
I was diagnosed with lupus when I was 10 :( and have been in and put of the hospital 5-6 more times and I'm having to go throughout kemo and I.v treatments every 2 weeks and I have to take 6 different medicines and lupus really does change your life
kristenfuentes1 6 months ago
i am awaiting test results after misdiagnosis after misdiagnosis and horrible pain and i lost a job due to the misdiagnosis, I am soo tired and my back hurts so bad and loss of hair, inside mouth sores at times fatigue and like kidney pain and low back pain. I was told no children before and i am blessed with a seven yr old. I have walked this path and now am waiting diagnosis would anyone be willing to talk with me one on one. I am just looking for answers. and not give up. never give up
alamidblackcat 8 months ago
It's not lupus
thechevron 8 months ago
@thechevron What is it?
maryamdatgirl 8 months ago
I feel helpless but I'm supportive of my wife and I wish there was a cure.
bnizl 8 months ago
I have had SLE for 2 years now. I am a 24 year old mother of a 2 year old son. I hope that there will be a cure one day and I want to feel healthy again. Did that lady get cured from stem cell transplant????
aimeesato10 8 months ago
just got tested for this, im a US military member, and i decided if it come back positive im going to give up living and refuse treatment,
DecoThe0ne 8 months ago
@DecoThe0ne
I was in the army when I was diagnised.. dont be ridiculous!!! we are valuable members of society and have a lot to give
tigressa1972 7 months ago
im 14 and a twin and me and my sister were diagnosed with lupus she at age 11 me at age 12 i lost all the hair on the top of my head and lost a rapid amount of weight i had 2 be homeschooled in the 6th grade and my sisters kidneys failed had 2 be in the hopistal 4 weeks got out had a seizure went back 2 the hospital 4 much longer and now has dialysis every mon tues thurs and sat had to be homeschooled as well but now were both in school and hangin in there with love and support from family, GOD
taylorcam321 9 months ago
@taylorcam321 You both are in my prayers.
Jimilynn 6 months ago
what is lupus?
DjJulianVEVO 9 months ago
may allah bless you all and make you stronger people
muds4u 9 months ago
I'm so sad to read about your problems with lupus. PLEASE, if you want to know how we defeated lupus, even though the doctors said it wasn't. Another friend of mine had lupus for 7 years, she was so sick...write to me and I can tell you how to get a cure for your illness, they're not chemicals. It's nanobiotechnology. My email es: maggie_rodrig27@hotmail.com
yitein23 9 months ago
BLESSINGS & PROSPERITY TO ALL EFFECTED BY LUPUS & THIER FAMILIES. THIERS HOPE!!! STAY FAITHFUL &OPTIMISTIC IT REALLY MAKES A DIFFERENCE LOOK FOR AND TOWARD ALL THE MANY BLESSINDS LIFE BRINGS!!!
ravonparish 10 months ago
@ravonparish Thankyou : )
launwatch 9 months ago
Im 13 years old, and was recientally diagnosed with lupus and fibromyalgia. I havent been to school in a month, and my friends get really worried when i dont reply. I havent been put on very many medications, but the ones im on arnt doing anything. I have high hopes, and good support, but at the same time, its not fun. I cant have children, and that was something i was looking forward to in the future. I want to die sometimes from the pain, its hell. People with lupus, hang on!
there is hope.!
XxseawhatweseasxX 10 months ago
I recently met a young woman with lupus... I didn't quite understand what it was or how it affects people but after watching this, I have so much more respect for how positive and joyful she is. Her kidneys are in a lot of trouble but she remains so optimistic. The lucky who aren't affected by major illnesses could learn so much from people like this. I'm truly considering if I'd be the right tissue and blood match for my friend so she could have one of my kidneys. God bless everyone here xx
sraphael 11 months ago
I have also had 2 strokes, but I try to stay positive. I just want people to be educated & pray that none of my friends or family have to go through this. My sister passed away with breast cancer, but she also had Lupus which I am convinced made it harder for her to fight the cancer, since it pretty much wipes out your immune system
lovesfreedomtoo 11 months ago
@sascha2674 it took them years to funally diagnose me with Lupus. Why don't you start a support group? It would help so many to not feel so alone. I know when I was first diagnosed, I felt like I was the only one in the world who had this disease. Bless you & much luck to you
lovesfreedomtoo 11 months ago
I was diagnosed with Lupus in the early 90's, it is so painful. I have had kidney failure, liver failure & so much joint pain & swelling. Now it has affected my heart & my pancreas. One of the worse things I go throughis the misunderstanding when people say, but you don't look sick, I have been called a hypochondriac, a liar, a drug seeker, & that was by medical professionals. I had to give up my, I am a surgical technologist & can no longer do the strenuous work, It is hard & scary
lovesfreedomtoo 11 months ago
My bestfriend since 4th grade just found out she has lupus... she was 15 when she found out.
CloseThyEyesx 11 months ago
I'm 25 years old and i just found out i have Lupus I'm scared I never been so scared in my whole life
ronssexybikerbae 11 months ago
My sister just told me she has lupus. I am scared and worried about how this disease is going to affect her.
superchick76 1 year ago
How negative can this clip be?! Its like saying Lupus is a Death Sentence when it is NOT! I have 4 kids, a loving husband, run several businesses, a great LIFE and happy and loving living to the max and yes I do have Lupus and no I don't let it control my life, positive minds people and many things you can do to live WELL, healthy diet, alternative and natural remedies are a choice with western medicine, Vitamin C (pure), Glucosamin & Fish Oil Capsules help pain, empower the mind, Love LIFE!
Christabelle67 1 year ago
Its not Lupus
MushroomSlappa69 1 year ago 5
@MushroomSlappa69 And that's not funny.
nlunlunlu 4 months ago
its never lupus
michaelchukwu22 1 year ago
How long can someone live without taking medication if they have lupis
poker7499 1 year ago
@poker7499 , I read recently, that before modern Steroids and Plaquenil they gave you about four years. Its sucks taking the drugs, but I am so glad I am still here and can get out of bed in the morning, before I was diagnosed and on the right drugs I couldn't, the pain is undescribable.
hinsey222 1 year ago
@poker7499 The more you deny lupus the worse off you are. The meds help to protect your organs from lupus. You will suffer a great deal of pain and the lupus will flare up until you end up in the ER with damage that could have been avoided.
babble2leeza 1 year ago
@poker7499 forever!! I'm living proof without meds for 3yrs way better & by the way Medications killed super producer JDilla
KlassyWomen 6 months ago
I had a friend who's mom had lupus. When I heard about it I had no idea what it was. I ended up looking up 1000 faces and saw it explained everything I've been going through. I may be obsessed with finding the diagnosis to my problem, but I think I'm just too afraid of finding the diagnosis on this. Hopefully SCIENCE comes through and finds a cure.
PandaValentine 1 year ago
Salve a Tutti Chi puo' Aiutarmi, o Mia Figlia di anni 35 a Il lupus 2004 Qui non Riescono a Tamponare la sua malattia ora Siamo Costreti a Fagli Fare Una trafusione di Sangue ogni 2 Settimane xke non riescono a tamponare La malattia al POLICLINICO 2 DI NAPOLI ITALIA Siamo Disperati i Valori sono Sempre bassi I cobli rossi bassi il rene non funziona bene chi puo' aiutarci Siamo Distrutti Grazie non capisco la lingua americana solo ita.
1carico 1 year ago
PPL ITS NOT TRUE U CANT HAVE BABIES...U CAN!!!!!!!!!!!!!!!!!!! U JUST HAVE TO BEE MORE ORGANISE....SO PLEASE DONT SAY U CANT HAVE CHILDREN COUS PPL READING THIS GET DEVASTATED...AND ITS NOT EVEN TRUE
huska86 1 year ago
@huska86 that depends on the case. those with moderate to severe can have premature menopause and those in chemo can affect their ovaries, etc,... . some can have kids other's don't, even those who can OBLIGATORY need medical attention or the baby or the woman could face some trouble.
Kjirkoh 1 year ago
Thanks for posting this :) I got very sick with my lungs and heart after I had my triplets. Then I could barely move from swollen and painful joints and I had severe fatigue. I went to the Dr. and he ran a LOT of tests then he sat me down and told me I had lupus. I was shocked because my husband has lupus. Now I just pray for my children.
canadianmuslimnproud 1 year ago
I dont have lupus but my friend does and i cant lose her she has done so much for me. i cant thank her enough for all that shes done for me.i cant help her i feel so useless. shes sufering and i cant do anything to help her. the only way God can hurt me is by hurting the ones i care about. he wont hurt me but he;ll hurt my loved ones.it makes me so sad im sorry for what you guys have to go through there will be a CURE someday i hope every1 with Lupus gets well and and lives long God bles u al;
TheCalenderonfire 1 year ago
i guess i am sooo screwed.. :-(((((((((((
HeidiEriksen 1 year ago
@HeidiEriksen, your not alone, i am there with you, like thousands of others. xx
hinsey222 1 year ago
@HeidiEriksen: Why do you say that?
4chango 1 year ago
GOD PROMISED TO HEAL ME i was diagnosed with lupus IV nephritis @ the beautiful age of 21, it was very aggressive. god blessed me with a wonderful supportive parents, family, friends,group of doctors and sent a great man into my life. god sent through this man that i was going to be okay to, to not be scared and that he (god)was with me. under went kemo theropy and 1year before treatment was over i was healed like he promised stop treatment and now pregnant with my frist child. god is true
loveemogirl4u 1 year ago
How are 4 people going to dislike this video???
xevilcowsgomoox 1 year ago
After suffering for more than a decade, & losing so much of my former self/life, I finally received this diagnosis very recently. Thanks for posting the video.
AuroraMumzy 1 year ago
My g-grandmother was native american & she died of Lupus. I have been dx with Fibromyalgia, OA, Interstitial Cystitis, Irritable bowel. I have suffered for over 20 yrs. I finally can no longer work. I am now almost homebound due to such severe joint pain & muscle pain. The docs say my blood work doesn't show Lupus, but some doctors have said it is a possibility. They never direct me on this. Its possibly because I no longer have insurance. I am now losing my hair and terrible dry eyes.
CherokeeMeli 1 year ago
Good 4 u shayluvsmj! Don't let lupus take over,I was diagnosed in 1987 eye was 9yrs and after that 8 days before my 11th b-day eye had a stroke. Im 32 now and believe me lupus bites lol.
musicchick1717 1 year ago
I was diagnosed with SLE when i was 13. Im 17 now and i am fortunate to have lived this long along with other medical problems. I hate lupus but what dont kill you makes you stronger. I was able 2 graduate hs with good grades.
SHAYLUVSMJ 1 year ago
4 year Lupus survivor I thank you for this video.
singerdancer07 1 year ago
wow this is my life ohmygod!!!
suleikadelarosa 1 year ago
I miss Dr. Manzi so much. I believe because of her, Dr. Domsic and her staff I am still doing well. I have good care at UNC-Chapel Hill but Dr Manzi is my hero. Everything she says is true. Miss you!
Sirene1127 1 year ago
Lady gaga have it.
TheXxMYSTARXX 1 year ago
lady gaga has lupus
pinkrave69 1 year ago
Women usually end up with Lupus more than men.
jbdream3 1 year ago
@jbdream3 that may be but i believe that the problem here is diagnosis on the part of not only the drs but also the patients. Men are STILL supposed to be "strong"
poosaypirate 1 year ago
This is something people need to hear about and help the cause. Also thank you for posting this video up :)
LTRCProductions2010 1 year ago
Thank you for posting your video. I'm experienced a painful condition for over a year and a half and the doctor was not sure what I have. Some days are more challenging than others, but I always try to remind myself that others are going through much harder challenges than mine. No one needs to look far to see someone else who is going through more and at the same time a good example of a positive good sport in life and an example to everyone.
Jessecraft1954 1 year ago
My father has lupus. He has been suffering for over 13 years. He is caucasian and it's very rare for that. I pray for everyone who is affected by this horrible disease.
SunWhiteWolf 1 year ago
my girlfriend was recently diagnosed with Lupus. She's only 19, and I hope and pray that she'll be okay. I'm so worried about her and if you're reading this, Carmen, I love you and hope you get better.
ripmeast21 1 year ago
ok um this is a scary video........
kimmykim81 1 year ago
yes you can have lupus and it may never show in a test...go to a lupus awarness site to find out about what you need to know..support me in my fight for treatment.Rachel Hayes facebook..please support
racheldesire 1 year ago
Can you still have Lupus and test negative? I also have all the symptoms, including the facial rash across the nose and cheeks, ulcers in the mouth and stuff, and my pregnancies were very dangerous. I had Preeclampia (sorry can't spell it) with both pregnancies, and I had a missed miscarriage. I suffer with terrible joint pain, some muscle pain, and extreme fatigue, and a long list of other problems.
Mojosfire 1 year ago
@Mojosfire my knowledge says that there is no one specific test for Lupus, there is the ANA but as far as i have read personally thats not reliable, a cousin of mine died of Lupus and tested negative until AFTER her death, .- it was the autopsy that gave the cause of death apparently.
so if if anything else is ruled out, sounds very possible FROM MY KNOWLEDGE ON THE TOPIC - try at least reading more about what lifestyle changes you need to make and test it out, good luck
poosaypirate 1 year ago
omg im will add all that suffer to this in my prayers, i just found out a close friend has this, and i knew nothin about it, she has to have a kidney removed, im afraid for her!
babygirl91580 1 year ago
Both my daughters' have SLE.....My youngest has had to undergo the chemo treatments for her kidneys...My oldest nearly died in August 2009....she has heart damage as a result and both have permanent kidney damage.....
penmart127 1 year ago
Great video!!! I have lupus too. I made a personal choice and switch my diet to vegan diet to see if it helps. I've only taken Prednisone (60mg/day) for 12 days and my doctor is already tapering it down for me. Just for your information.
tracywen55 1 year ago
I wish you all peace and health, really trully, I hope the little moments bring you joy.
Weisenheimer78 1 year ago
i was diagnosed with lupus at the age of 7 (luckily). i was in & out of the hospital with complications, such as thrombocytopenia (low platelet count & extreme bleeding). i didnt get to enjoy life until i turned 12 & went into remission... 3 years later i had a flare up and my SLE advanced to lupus nephritis. im 20 now and in college and working on my degree in biochem. i'm losing hair and i have joint pain everyday, but Lupus doesn't have to hold me down. i really do pray for a cure one day!
jjacela 1 year ago 31
I just found out that my wife have lupus, my God I'm all here by my self thinking of this and geting all the info I can gather together with tears on my eyes. Sorry I just had to take this out of my chest a bit please someone help I just found out today.
luisnitro91 1 year ago
I am a 19 yo. I have been diagnosed with a blood mutation, meaning bloodclots. I had DVT and PE and theres a possiblity I also have Lupus. I also have Juvinile Rheumatoid arthritis. I...Im very scared of Lupus. I hope theres a cure because Ive had enough of pain already...
bbrenda17 2 years ago
Hi, my name is J. Daniel Bracamontes and i have LUPUS since like 8 months, i feel happy for a fundation like this, trying to help people with LUPUS, I want to Know more about Lupus coz here in mexico theres not alot of information... Sorry but my english is not hat good...
briandaniel39 2 years ago
my heart goes out to all lupus patients young and old i was just diagnosed with this disease last april ! i wish you all health love and happiness ALWAYS!!<3
sandraaaa4 2 years ago
please what is a cure for this disease..??? anyone please help me... my sister had it.... please.... please..... please....
curttney06 2 years ago
I would like to help you, but I don't know how to contact you because Youtube will remove me from the site or something. gregclin hotmail
gregclin 1 year ago
please i really don't want it i really don't
my oldest sister die bc of this
and now my other sister is having the sign of having this
even though i don't have a great relationship in the family
i really wish my last oldest sister will live with me
and will not leave me i really can't take it
i can't bear this for one more time
5:50 exactly like my story
tearsneverdrop27433 2 years ago
I lost my FATHER to this disease. It really aggravates me that you always focus on the woman aspect. Maybe it does affect more women but let me tell you from personal experience it's just as vital an issue if you are male. I wish you would focus on the men a little more. It really is kind of insulting to be constantly made to feel like there is something extra wrong with you because you have a "womans" disease.
glorygrl1997 2 years ago
my brother has lupus, i am praying
darthdoodielj 2 years ago
damn it my gf has lupus
davidjjdj 2 years ago
mine too bro =(
jel251 2 years ago
According to House, it's never lupus.
saiyanprince09 2 years ago
I didn't realize how important our health it is until recently!
sonofmanchu 2 years ago
It's not Lupus... it's never Lupus.
ifhgsfj 2 years ago
I was dignosed when i was 10
theshowiscool1 2 years ago
I'm 19 and i just found out that i have lupus
xkittyxcore 2 years ago
what do "lupus hairs" look like?? i can't find any pics on the net!! i have some new hair growth but don't know if they are lupus hairs. please help
starsweet4 2 years ago
@starsweet4
i'm not sure but pretty much like cancer
hair falling off
well that's my happen to my sister then she passed away
tearsneverdrop27433 2 years ago
Lupus hair is how your hair looks from affects of the disease.. not a type of hair that shows up that tells u that you have it.
LovelornBabe17 2 years ago
I got diagnosed with lupus when I was 4 years old. I just turned 21 yesterday. It's been a part of my life as long as I can remember, so it's kind of a natural part of life or me. But sometimes I get so scared that I won't be able to live the life I want. And it's so hard to explain to friends, however close they are, how it feels to be a 20-yr old with the body of an 85-yr old...
emeous 2 years ago
Please find a cure for lupus, donate, do anything, my sister is an angel and she doesn't deserve this she's such a good person, she doesn't deserve to go through what she is going through
inchalottaful 2 years ago
i have just found out my sister in law has lupus,barely 2 hours ago. someone please help me help her. what can i do to make things better for her....omg i didn't know it was this bad! right now she is in alot of pain WHAT DO I DO?
hottiegerl 2 years ago
I was diagnosed when I was 16,and I will be 50 yrs. old in Nov. I have been on steroids off and on the whole time. I couldn't dress myself or write my own name in the beginning. Despite the odds, after 11 yrs. of trying,I gave birth to a beautiful daughter 17 yrs. ago. She and my wonderful husband keep me going. I developed AVN of both knees, I have had 5 knee sugeries. The fatigue and the pain is the most horrible part because I'm allergic to all pain meds. Never give Up!!!
connies3699 2 years ago 9
D: thats a touching story. i wish u and your family luck
CeroRasengan 2 years ago
I think this is a great video but there is a really cute book that i read and it's called Lupus Love and it helps explain the disease to kids whos parents have lupus its really really cute .. if you know anyone that has kids and has lupus you should reccommend the book to them
11Anastasia 2 years ago
i have lupus a couple of months ago i started to have joint pain. at first dey said it was drug induced and i beilive and pray dat it is. acne medicine induced my lupus becuase no one in my family has this. im scared but im hopeful im on steroids and i think the drugs demselves are making me go insane. i was perfecttly healthy before never missed a pieriod never even gotten sick. am i going to continue to get more symtoms like liver heart lung problems?
belladiana09 2 years ago
my mother has lupus, and it seemed to start off as her joints, and back, and moved to her skin. It affects everyone very differently. Keep taking your medications. There are different medications and treatments. My mother found a good medication and is doing very well now.
auntanti 2 years ago
steroids can cause you to feel strange. The symtoms are organs involved with lupus usually are there when they discover you have lupus. Have your primary doctor to refer you to heart, lung and kidney doctors to be checked out. I found it was my kidney and have had good care. keep your head up, you are not alone.
AceHigh121 2 years ago
michael jackson had lupus, not many people know that. this video helps me understand what he must have had to go through...
god bless you all
docrichy 2 years ago
michael jackson had lupus, not many people know that. this video helps me understand what he must of had to deal with...
god bless you all.
docrichy 2 years ago
well i have lupus i had it for 3 yrs and im fine so far so good hopefully its stays like this the only medicine im on is hydroxychloroquin....hmmmm
dubqueen2009 2 years ago
i hope u stay that way through out the yrs i was the same way and i had lupus for 11yrs now
face204 2 years ago
dubqueen im also on the same one.
thiebvan 2 years ago
Lupus?
This...
is...
SPARTA!!!
Fettfan996 2 years ago
ITS NEVER LUPUS
thehuffy 2 years ago
My mom has Lupus. My parents didn't tell me or my siblings until we were in our teens. They didn't want us to worry about her. I love them for this. My dad has Melanoma, so my Mom is the only one working to support us. She is working, and spending time helping with my dad. She works as hard as i believe one can and because of this she doesn't worry enough about herself. Just tonight she is in the hospital because her lung was hurting and it was hard to breathe. I love her so much
yoyad 2 years ago 32
@yoyad its lupus
jordanpasek 1 year ago
@yoyad My friend died with metastatic malignant melanoma dec 20th 2009. My fiancee has a very dear friend whom he works with who has kidney faliure suffering lupus, he is in hospital at present so nobody knows the prognosis. He has a child with spina-bifida. Its a very cruel world and i wish everyone to be well and enjoy life. I wish u well and hope that everyone is healthy love julia xxxx
TheMagnum26 1 year ago
@yoyad
your parents sound very beautifull and strong. I will pray for yall
astralflower11 11 months ago
@yoyad how is she doing now?
jay7sa 9 months ago
My mom has had Lupus since she was young. She had me and my brother and sister. Both her and my Dad didn't want us to have to worry about it so they didn't tell us until we were in our teens. I love them for that. There were many times when she was sick and/or in the hospital that were very scary. She works so hard to support me and my family and there are so many times that I am ignorant to that fact. Especially now since my dad has Melanoma and she is trying to work, while being with my dad.
yoyad 2 years ago
According to House, it's not lupus
saiyanprince09 2 years ago
i don't now i see something looks like a black thing and on the other hand i am a little bit of white (hope not i have vittigo or what the name is)please god let me don't be white! i love my color and i don't wanna have vittigo!
simasykkel 2 years ago
my dr just told me today i probably have it. im waiting on blood work. im really scared. i didnt know it was life threatning. i have 3 kids to live for. but im always in pain. its real bad in my back & chest. maybe i dont want to know. im too young for this.
steph3kids 2 years ago
ITS NEVER LUPUS
Jesusrapeslittleboys 2 years ago
My mother had lupus. We didn't know until she died because she never was diagnosed with it until her death when her lungs collapsed after surgery and she passed away. I never knew what this was or what could have happened. My mother didn't believe going to the doctors. She had rheumatoid Arthritis all her adult life.
5yearplan1 2 years ago
I was diogonised with lupus last year 2008 its very painful .But i have tried to cope even though attimes its very difficult.But i comfort my self by trying to forget everything.
popolipotoo 2 years ago
All I can say is that the treatment can help you but first of all you must help yourself. You dont have to listen to what people say about how horrible is to have lupus, you only have to think that you will be ok no matter what . I did that and I had no side effects from cyclophosphamide and corticosteroids , I only got a little fatter now I am back at my normal weight and all my blood tests are ok even if when I started all my tests were a COMPLETE disaster.I wish you all good health.Bye :).
Moromete89 2 years ago
My dear wife is 35 and was diagnosed with lupus 4 years ago. Two years ago she was re evaluated and the diagnosis was changed to Bechet Syndrome. Last week it was changed back to lupus. I'm also very scared that someday it would be fatal and refrain of thinking about that reality. We live life one day at a time. Doctors are in the dark about this disease and I believe a lot of research must be done on this subject so come on you big pharmaceutical companies. Put your money into this.
aakligearchie 2 years ago
i am 14 yrs old and i was digonsed six months ago and it i very hard to live like this i got overi t though
bre07897 2 years ago
hi i am 15 years old and i was just diagnosed with lupus RA. so tht measn i have lupus and rheumatoid arthritis. i know lupus is a very scary disease and could be fatal. but we cannot let it take over us! i am trying with all my heart to live a life with no pain! good luck to all of you
heyyitslaura101 2 years ago
Stress and fear are the greatest enemy of this disease. Lupus is unpredictable and can be debilitating -- but most of us do not die. We learn to live with it. We find hope and ways to cope. For me, a deep faith in God and prayer have kept me going. Good information, healthy choices and a positive mental attitude help me actually live day to day.
LisaVanAllen 2 years ago
I recently have had a blood test to see if I have lupus. Results have not come back yet. I'm worried.
OhThatsSplendid 2 years ago
You right lupus {the latin word for wolf }
moffies 2 years ago
Both my mom and I have Lupus. I was diagnosed when I was 15. I'm 20 now. Everything that the doctor said in the end of the video in regards to Lupus patients' fears is true for me. Those are all the things I worry about... as much as I'm in pain, I still and very thankful for life.
suep588 2 years ago
I was recently diagnosed with Lupus but my doc thinks I've been living with Lupus since I was 15 and I am also 20 yrs old now. I lost my one and only son on March 25, 2009 when I was only 26 weeks pregnant with him because of the Lupus, he was stillborn. It's so devastating to know that any pregnancy for women with Lupus will always be high-risk...
aukai102706 2 years ago
Hasn't any one checked the coloration between childbirth and Lupus? My mother had twins (baby's 4 and 5) And THEN she was diagnosed with Lupus.. Why hasn't anyone looked into this? Why is there no information out there about this?
ObsidianSin 3 years ago
Childbirth is often a trigger for a lupus flare. It is not the cause, but exacerbates the disease that might have been lying dormant. There has been quite a bit on research on this.
LisaVanAllen 2 years ago
@LisaVanAllen very true this is how I finally got diagnosed
mimi16011981 2 months ago
They have. . .no one knows what the cause is.
They think it's hereditary but they don't know the cause. No one really knows.
But I have come to realize that lupus is like a bully that likes to pick on the weak therefore control the bully and the bully will go back into hiding.
mmmBRIAAN 2 years ago
mmmBRIAAN: That's like saying AIDS is a bully...and you know no matter what It will never go away. I had a friend that had lupus...believe me when I say she fought HARD to live...but it just wasn't enough...she passed away last year.
Eternalsummersong 2 years ago 2
The connection is there. My nephrologist told me the two risk factors that made him order an ANA test were being a woman and being in my third pregnancy. I believe the highest risk group consist of women in their child bearing years.
anlong23 2 years ago
I had the same problem. i gave birth to my daughter and within one year i was diagnosed of lupus. I dont know how i got??
antoiniraj 2 years ago
Why is it called lupus (the Latin word for wolf, if I'm not mistaken)?
PuppiesandSunshine 3 years ago 7
because the butterfly rash (raised skin across the cheeks-often resembling a butterfly) mimics the markings of a wolf's muzzle.
be11ebottom 2 years ago
because the scars in the face of some patients with lupus look like a wolf attack
cacatesaco 2 years ago
The rash on the face can resemble a wolf bite.
LisaVanAllen 2 years ago
Hi, it's called lupus because of the rash presented across the face resembled a wolf's bite...hope this helped :)
theleepchatchannel 2 years ago
The marks on the face was thought to be a sign that some one was a werewolf. This was a supersticious belief that was discredited but the name stuck.
aakligearchie 2 years ago
right
evilgenius88 2 years ago
Because the hurts, on the patients skin, seems like wolves bites
AlanVictorLR 2 years ago 2
because some sufferers can have a rash on their face, in the same place a wolf has its white colourings
25tegz 2 years ago
@PuppiesandSunshine Supposedly many people get a rash on their face in the form of a wolf mask, sometimes represented as a butterfly as well. That I think is the reason but please correct me if I'm wrong.
Artmetropolis 1 year ago
My mother has Lupus. It took two years for the doctors to diagnose her. It attacked her joints in her spine and her hips. For the longest time she couldn't get out of bed, and was on high doses of prednisone. She had massive skin outbreaks, and used hardly be able to eat because her digestive tract seemed involved, and she would go anaphalitic on many foods.
She is getting her disease under control through anti-malarial drugs. She is doing well now.
LeeAnne2001 3 years ago
How many people here watching this video (who have Lupus) have blood type B?
lostindreams3 3 years ago
My cousin has Lupus. She really really really wanted to have kids. This really hurts her that she can't.
lostindreams3 3 years ago
This is a great video. I battle my lupus everyday, as well as mixed connective tissue disease and fibromyalgia. Aside from the pain, weakness, fatigue, etc...I get so tired of other people having an opinion about my disease. They do not treat SLE as a serious disease, and often assume that because I am young that I am lazy or a hypochondriac. I was diagnosed 8 years ago & have been tested repeatedly & treated as much as they can. It's a frustrating disease. But I always have hope.
bettyiskeen 3 years ago
im 13 and i was dianosed with Lupus 2 months ago only my closest of riends know and i hate it now that i told one of them he could bareley look at me for weeks after i told hima nd my other firend broke down when i told he my lupus affects my kidneys and my nervous system i have flreups loads and i have bad days at lest 3 times a week i hate it
fihaprincess 3 years ago
Hi fihaprincess...I'm so sorry to hear of your story. I was diagnosed in 2003, so I can def relate to how you feel about telling those aroundd you. I hope all is well with you ;)
theleepchatchannel 2 years ago
Hello, I was just wondering how your bad days are, and what they might consist of. My girlfriend has lupus and I'm trying to learn as much as I can about it.
trixr4kids450 2 years ago
*Dr. House appears*
its not lupus.
colossus5000 3 years ago 19
@colossus5000 sounds like all my doctors so far
bleeding noses,
numbness in limbs, inability to breathe, arthritis, severe chronic fatigue, muscle fatigue
dizziness, just to name a few
and the drs say?
" its ok Mr, Blank, "
poosaypirate 1 year ago
I think the most difficult part of this is trying to get a diagnosis. Even though it's such a prevalent disease so many doctors seem unable to accurately diagnose it. Currently my doctor is waiting solely for my ANA to tip over into abnormal to verify all of the physical complaints. I joke that perhaps I'll turn up dead in the meantime and they'll actually know what's wrong. But, really... it's not a joke... since Lupus is such a variable disease...
kakera 3 years ago 2
I agree whole heartly
aakligearchie 2 years ago
I have Lupus, no insurance and do as much as i can... I also have Fibromyalgia and hashimotosthyroiditis... Recently i have been attacked by what im thinking mosqutos but my legs and arms are covered in lesion looking sores, my eye is infected i have chest pain on the left side... I have panic attacks, cant sleep, my heart races wildly.. I have constant heartburn and everytime i eat i throw up. Please help me, chat lines anything.
roxy112671 3 years ago
Try malairia medicines unfortunately only available on a prescription.
aakligearchie 2 years ago
roxy i was dx w/lupus in 2001. i understand what your going through. there is two online groups i joined. try typing in "lupies" and md junction on yahoo or google search. i hope going to these sites will help you. the folks there all have lupus and connective/immune diseases which you can ask them questions pertaining to your symptoms. god bless.
caligirl3000 2 years ago
have you appled for medicade? and state disabilbty?
snazzyprintgirl 2 years ago
omg omg omg are you okay??
CrissFreak2315 2 years ago
im 9 and i have lupus and i just goy it my mom said that we have a better way of getting it to be gone its hard for me to breath im scared will i die?
webkinzruless677 3 years ago 2
i was diagnosed with lupus at age 10 and now im almost 20. right now i am very healthy, so dont worry jus take care of yourself
yellashelly 3 years ago
No, you won't. But you have to be really careful with your health from now on. You might not be able to have as much "FUN" as other kids do when you grow up because you must have a very healthy life. So no fires or too much pizza. You need to ensure to have a good night sleep everyday and to do more excises...etc.
sonofmanchu 2 years ago
Hi: Great video I was diagnose with Lupus at the age of 13 in 1990. I received kimo because my kidneys were damage but in 1992 everything was fine and since then I've been in remition and have two beautiful kids. Is not easy having Lupus.
jennys77 3 years ago
I'm so happy to hear you're in remission and were able to have children. I was diagnosed in 2003...
theleepchatchannel 2 years ago
i ws told i had lupus , than they changed to fibromyalgia.
ntiego 3 years ago
That's because it's never lupus.
saiyanprince09 2 years ago
It was hard for me to adapt to the disease, and I do know of people having children, but they are at a higher risk for pregnancy. You need to really consult your physician.
Iloverockinraffi 3 years ago
I found out that I had lupus back in '05. I went into renal failure, but luckily, since I was in nursing school at the time, I knew the signs and symptoms of high blood pressure (which can be caused by the kidneys as well), so I knew to go to the doctor. I haven't had a flare up since then. I had to be put on chemotherapy and steroids. Lupus has many different signs and symptoms though. You can find lupus support groups online....cont.
Iloverockinraffi 3 years ago
my mother died from this..
HeartsGurl 3 years ago
all this talk of dying is kind of scaring me...although I am just 19. How am I supposed to work and compete if I feel tired all the time?
blueskyaug 3 years ago
It's never Lupus.
elwinator 3 years ago