This Is Lupus

No video

This Is Lupus

Рет қаралды 377,568

Күн бұрын

Lupus affects millions.
Individuals whose lives have been greatly affected by lupus describe the suffering caused by disease and offer ways that you can help find a cure.

With nearly 300 chapters, branches and support groups in 32 states, the Lupus Foundation of America (LFA) is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. Our mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure. Research, education, and patient services are at the heart of LFA's programs.

Пікірлер: 129

@LisaVanAllenPhD 15 жыл бұрын

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.

@lupiebutterfly4464 7 жыл бұрын

I have been diagnosed with Lupus and Fibromyalgia. I have had so many sleepless nights afraid that I may not be awake the next morning. Lupus have stolen a lot from my life. It has impacted my career, my social life, my mental state. I wish we can find a cure in my lifetime. I dream of being normal again

@infiniterra 11 жыл бұрын

Lupus can be as bad as cancer. Some cancers can be cured or eliminated. Some lupus sufferers have a painful life without cure. Every case is different.

@ronssexybikerbae 13 жыл бұрын

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

@violet2048 16 жыл бұрын

Hi! I'm 60, female and was diagnosed in 1991 after nearly 2 years of unusual symptoms. Finally got so sick I was in bed for about 5 months, I got a second opinion and told the doctor my hunch about lupus, because my cousin also has it. My kidneys were bad,epstein bar was off the chart, my joints were extremely painful, my skin was involved, and the fatigue was and still is a problem. I've been in remission now 3 years but have to stay out of the sun and take the plaquenil. I feel lucky today

@teresa-hy9um 9 жыл бұрын

My lupus, I had this illness since I was 22 now I'm 52 I have marked on my face my hair is thin and bald spots all over, I'm on disability and I work part time I have no children and I'm alone .I'm scared now that I'm older my husband died my mom is gone I'm alone

@jaz8634 8 жыл бұрын

I feel your pain...

@luisnitro91 14 жыл бұрын

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.

@BowlingFreak218 16 жыл бұрын

Best thing I can say is eat healthy. Make sure you get all your vitamins, minerals and Anti-oxidants. Stay away from fast food. Fruits ,vegetables should be part of your daily diet. If you're tired relax. Take a nap. Remove stress from your life.

@Noosa1978 17 жыл бұрын

My cousin has had lupus since she was 23. She is a single mom with 3 girls. Her husband died last year. She is not afraid of dying because she is extreamly religious. We are christians. However she does not want to die till her daughters are old enough to care for themselves. Most of our family is in Egypt and she does not trust her american in-laws because they are too liberal. I hope for a cure someday.

@loveemogirl4u 14 жыл бұрын

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

@angielasloan377 6 жыл бұрын

shayla Carrasquillo Praise God that is amazing

@jennys77 16 жыл бұрын

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.

@sraphael 13 жыл бұрын

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

@LisaVanAllenPhD 15 жыл бұрын

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.

@taylorcam321 13 жыл бұрын

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

@emeous 14 жыл бұрын

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...

@PandaValentine 13 жыл бұрын

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.

@lovesfreedomtoo 13 жыл бұрын

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

@theleepchatchannel 15 жыл бұрын

I'm so happy to hear you're in remission and were able to have children. I was diagnosed in 2003...

@LupusOrg 16 жыл бұрын

These autoantibodies cause inflammation, pain and damage in various parts of the body. Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

@CrackerBarrelXheese 13 жыл бұрын

My mother has Lupus, but she has a very unique form.. Its been in remission since they found it, just before I was born... =/

@Lacey1Spytfiyah 16 жыл бұрын

I thank you so much for the information provided. It saddens me dearly that my mother has been diagnosed with osteo, carpal tunnel, rheumatoid arthritis and a number of other joint related ailments. Four years after these diagnosis, she was informed of her being afflicted with Lupus. So unfair, when she has taken so many differenty drugs. Just yesterday she was told she has bronchitis, that being said. Lupus affects organs! Thank you again for the insight.

@mack3905 9 жыл бұрын

I am lupus my.biggest fear is nothing,knowing the condition is knowing the cure.I take care my self, even sometimes is overwhelming and stopping the treament is putting my life in danger, my niece die in August of lupus complications this year she was only 22.take good care kidneys.don't consumed salty food or high in potassium.

@jaz8634 8 жыл бұрын

i feel your pain

@annim6367 9 жыл бұрын

Thank you for this post...and blessings to those who have this dreaded disease.

@jjacela 14 жыл бұрын

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!

@aakligearchie 15 жыл бұрын

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.

@merrynbenham2000 12 жыл бұрын

I have Fibromyalgia and am going through the tests to confirm Lupus. Hang in there :(

@glozell1 16 жыл бұрын

This was a great video on Lupus... will you please take the time to see Lisa's Lupus story... It's Lisa Life Love and Lupus on You Tube... Thanks so much for sharing the word about Lupus... Thanks GloZell

@Noosa1978 16 жыл бұрын

My cousin has lupus and 3 daughters. She is in and out of the hospital and is scare because she does not want to die till her girls are old enough to take care of themselves. She set aside a trust for them that if she dies, they are taken care of.

@Rukirome 14 жыл бұрын

This is something people need to hear about and help the cause. Also thank you for posting this video up :)

@Jessecraft1954 14 жыл бұрын

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.

@briandaniel39 14 жыл бұрын

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...

@theleepchatchannel 15 жыл бұрын

Wow. I'm so sorry to hear about your mom. I hope she's better :) I was diagnosed in 2003

@aukai102706 15 жыл бұрын

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...

@shanhayes2488 9 жыл бұрын

I have this disease and the remarkable thing is that it effects different patients very differently. The experiences in this video are on the severe end of the lupus spectrum. I have 4 healthy children and while I have challenges, to be sure, (THANK GOD for prednisone), a person can live and thrive with this disease. I have found making contact with other patients CRITICAL to my emotional well-being. I suffered alone for years, due to a general lack of understanding of the disease even among medical professionals! But YOU DON'T HAVE TO. Go to the Lupus Walk, contact your state lupus org, look at the LUPUS Foundation of America Website - GET CONNECTED WITH OTHERS.

@Boetica1960 9 жыл бұрын

shannon hayes A manageable life is so important. Many people don't understand the limitations of Lupus sufferers because even though they may look fine, there is fatigue and pain to deal with daily.

@TheXPlayerZone 8 жыл бұрын

predisone erodes your bones over time, I take methotrexate ask your doc about it if you haven't switched or tried just saying

@BGF_276HUNTERSPO8NTSF 8 жыл бұрын

+Boetica1960 DITTO this is what I deal with EVERY DAY since my diagnosis it sucks my life changed 180 I can barely walk from dancing at discos to being in a wheel chair literally OVERNITE im very serious its one day im running exerciseing to disabled in a chair my life is non exsisting no friends no more strength to walk my dogs its a very debillitateing disease we need a cure TODAY............i

@shanhayes2488 8 жыл бұрын

VEGASGIRL Sounds like my expererience. Where do you live? I have another friend with SLE in a wheelchair. Maybe we could meet up.

@BGF_276HUNTERSPO8NTSF 8 жыл бұрын

LAS VEGAS NEVADA

@Macrina1818 12 жыл бұрын

Jeesh.... just cried my eyes out.

@kakera 16 жыл бұрын

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...

@Sirene1127 14 жыл бұрын

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!

@LupusOrg 16 жыл бұрын

No one knows what causes lupus. However, scientists believe that hormones, genetics (heredity), and environment are all involved.

@BGF_276HUNTERSPO8NTSF 8 жыл бұрын

OH MY RIP KASSIE MAY YOU LIGHT THE HEAVENS AS BRIGHT AS A STAR GOD BLESS YOUR BABYS AND FAMILY A LUPUS SISTER LESLIE IN LAS VEGAS. THIS SCARES ME TO HEAR KASSIES STORY,IS HERS A RARE CASE OF LUPUS?

@theleepchatchannel 15 жыл бұрын

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 ;)

@Grace3753 13 жыл бұрын

@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.

@CloseThyEyesx 13 жыл бұрын

My bestfriend since 4th grade just found out she has lupus... she was 15 when she found out.

@Artmetropolis 14 жыл бұрын

@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.

@theleepchatchannel 15 жыл бұрын

I'm sorry to hear of your mom...I hope she is better today :)

@lovesfreedomtoo 13 жыл бұрын

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

@11Anastasia 15 жыл бұрын

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

@astralflower11 13 жыл бұрын

@yoyad your parents sound very beautifull and strong. I will pray for yall

@darthdoodielj 14 жыл бұрын

my brother has lupus, i am praying

@jenniferjordan2383 9 жыл бұрын

In your story. It is similar to mine but mine is a long time being diagnosed

@aidafernandez6793 7 жыл бұрын

Dios es mi. doctor de cabecera

@RicaG29 10 жыл бұрын

Going to sleep and waking up a month later. That is EXACTLY what happened to me when I was first diagnosed with Lupus.

@face204 15 жыл бұрын

i hope u stay that way through out the yrs i was the same way and i had lupus for 11yrs now

@babygirl91580 14 жыл бұрын

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!

@aidafernandez6793 7 жыл бұрын

Bogota. Colombia

@Mojosfire 14 жыл бұрын

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.

@lovesfreedomtoo 13 жыл бұрын

@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

@BGF_276HUNTERSPO8NTSF 8 жыл бұрын

Yes its a huge life changer and I know I have lupus at first I thought I had elephantitis? Now I have placquenal pain killers etc and I also have lung issues so im preying I keep it at bay HOPE FOR MORE RESEARCH its what we need...............

@elizabethcolegrove1682 6 жыл бұрын

I have lupus, however, I feel o have it on the milder side. It attacks my muscular skeleton system the most. My h hands & feet are swollen, my bones & muscles ache, dry eyes, dry mouth, fatigue. Stiffness of arthritis, not my joints, my whole body, like Parkinson's or multiple sclerosis, & I have sjogrens syndrome, & diabetes too.

@aimeesato10 13 жыл бұрын

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????

@theleepchatchannel 15 жыл бұрын

I'm sorry to hear about your friend.

@blueskyaug 16 жыл бұрын

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?

@mimi16011981 12 жыл бұрын

@LisaVanAllen very true this is how I finally got diagnosed

@theleepchatchannel 15 жыл бұрын

Hi, it's called lupus because of the rash presented across the face resembled a wolf's bite...hope this helped :)

@lostindreams3 15 жыл бұрын

My cousin has Lupus. She really really really wanted to have kids. This really hurts her that she can't.

@penmart127 14 жыл бұрын

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.....

@babble2leeza 13 жыл бұрын

@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.

@caligirl3000 15 жыл бұрын

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.

@pibicates 17 жыл бұрын

im from philippines and i have lupus i was diagnozed when i was 12 years old.i was in the condition that im really gonna die but luckily i survive but because of steroids my left knee has been damaged and till now i lost my self confidence i dont know what im gonna do to this knee..

@antoiniraj 15 жыл бұрын

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??

@kakera 16 жыл бұрын

Only your doctor can do the right tests and then refer you to a specialist (a rheumatologist) for a diagnosis)

@malasezia 16 жыл бұрын

i have lupus for 4 years now. am in remission for 3years. Im a medical technologist by profession and my workplace is very risky for me. i managed to live a normal life. i still do things i usually do before i was diagnosed and my vital organs are still well. i regularly check on my being. cbc, ana esr and urinalysis and other basics. i do think that emotional stress has somethin to do with it. i think we, lupus patients should always think positive and be very watchful with our health.

@Piranha8661 16 жыл бұрын

My mom has lupus but she doesn't know that I know. You need to just do things like help around the house.

@aakligearchie 15 жыл бұрын

I agree whole heartly

@aidafernandez6793 7 жыл бұрын

mi nombre es Aida luz. Fernández. .soy colombiana. padezco. les. y estuve. mal.diagnóstico. varios años. .. que vascuituluis. que. púrpura. que artritis. ..

@Jimilynn 13 жыл бұрын

@taylorcam321 You both are in my prayers.

@FGMRealtyTV 16 жыл бұрын

i have lupus i was diagnosed last october im not too much aware of this i hope you can help me to give some information about your experience. im from philippines. can you help me ?

@Chlomin 14 жыл бұрын

@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

@starsweet4 14 жыл бұрын

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

@ZTako 15 жыл бұрын

D: thats a touching story. i wish u and your family luck

@Chlomin 14 жыл бұрын

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

@h0ao3 16 жыл бұрын

hi . i am 21 male, im a nursing student,im gona graduate next year 2008, is there anyway i can do to help this organization?? pls let me know how to contribute..my mom was just diagnosed with lupus today..im heartbroken..i couldnt think of anything but how much i love her..i love he sooo much...i love my mom every seconds of my life...she's the only thing in life that keeps me goin..im typing this right now with tears in my eyes...pls help us help others.. thanks soooo much..

@aakligearchie 15 жыл бұрын

Try malairia medicines unfortunately only available on a prescription.

@fihaprincess 15 жыл бұрын

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

@aakligearchie 15 жыл бұрын

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.

@musicchick1717 14 жыл бұрын

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.

@evilgenius88 15 жыл бұрын

right

@mmmBRIAAN 15 жыл бұрын

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.

@gregoryhouse5903 9 жыл бұрын

*It's not Lupus*

@yatakitumbitai 10 жыл бұрын

my coworker's wife died today due to this disease

@annim6367 9 жыл бұрын

I am so sorry xxooa

@jaz8634 8 жыл бұрын

feel your pain

@belladiana09 15 жыл бұрын

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?

@KlassyWomen 13 жыл бұрын

@poker7499 forever!! I'm living proof without meds for 3yrs way better & by the way Medications killed super producer JDilla

@launwatch 13 жыл бұрын

@ravonparish Thankyou : )

@LupusOrg 16 жыл бұрын

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Normally the immune system produces proteins called antibodies that protect the body from foreign invaders, such as bacteria and viruses. With lupus, the immune system cannot tell the difference between these foreign invaders and the body's healthy tissues and creates autoantibodies ("auto" means "self") that attack and destroy healthy tissue.

@amaliaramos1995 10 жыл бұрын

Ok now im scared selina gomez has this not helping

@25tegz 15 жыл бұрын

because some sufferers can have a rash on their face, in the same place a wolf has its white colourings

@tylanaty2 16 жыл бұрын

hi.. i'm 21 years old and i was diagnose with lupus this last october 07 i went to the e.r. with shortness of breath, my lungs were filled with blood and i spend there almost a month since then I've been intubated twice las time i was in the hospital was in november for the same reason i've been throught quemo right now its been two month since i got out of the hospital i'm not in quemo anymore now i feel much better but i just want to know what are the chanses for me to have kids are there any?