I got my diagnosis in June this year and I am still waiting to find out how bad it is. I got a rash on my face for so many years ago and my dermatologist thought it was pimples. But then I changed my dermatologist and I got answers to what it was. I am often very tired and my knee has bothered me for many years now, without my doctor found out what was wrong with me. But I hope soon will have more clarity about my lupus
My problem with my diagnosis is that my family and friends do not believe that I am ill. What they can not see, they can not understand. You're not sick, you're just lazy. And must admit that it crushes my heart a bit every time they say that, I really don´t have the right support :-(
I was just diagnosed with SLE Lupus in Aug of last year. We are still trying to find the right treatments for me to maintain the illness. I'm a fighter though and I do have my good days and bad but i am so thankful to have another day with my family and be around those who care about me. We will find a cure! God bless
Yesterday we got a phone call from grandfather, he said it was bad news. My cousin was diagnosed with lupus.
She is 15, and she has trained for many years to become a professional skier. They told me that she must give up that dream now.
I feel sorry for her, but I know everybody in my family will support her, like they supported my mom after she got a stroke in her brain. We are a close family...
I hope she gets better, and everybody else with lupus or a disease.
I'm having my first appointment with a lupas specialist on Wednesday and I am so terrified. I have always been sick and sore off an on my whole life and I'm only 20 and my aunty has it so my doc wants me tested. Even if I don't have it I feel like i must be a hypochondriac and I hate going to the doctors because I always have a list of things wrong.
Hey I am a guy from Canada I was diagnosed with SLE in Jan 2006 when i was 23 years old i have for 3 years now .. but my problem is tht i dont stay on my medications cuz it drives me crazy what can i do i need help plzzzz
Hi there..I'd just find out in November 2008 that I have SLE. I'm 17years old.Before i knew that,i was in the hospital for 5 weeks.I'm still worried about my disease.But I must live with it.I have much medicine that will take care the SLE.One of the medicine is Prednisone.I really can't take it anymore. My face is a lil bit swollen.Some people just don't understand.Sometimes i get mad at myself..but god made me the way I am. Can't help it.I'll have learn to accept the disease and to love myself.
@MissRomyy i know you posted this a while ago but i too take prednisone but everytime it gets lowered for me i get sicker i used to have my face get swollen but it eventually went away, i would like to know now how are you doing because im a male 14 with lupus which is rare
@OfficialDJEJ yes it's a while ago when i posted it,untill now i didn't remember i wrote this.It's getting much better with me now,i've stopped with prednisone sinds October 2009,my face is back to what it always was.But i can't get the weight that i used to have..but it don't bother me anymore.I'm much happier and i feel much different without prednisone,it feels like i'm finally my old self again.Instead of pred.i've got Imuran(named in Dutch)right now.The SLE is totally under controle now.
@MissRomyy oh wow that is good, my doctor has spoke to me about imuran but he never went into details i have prednisone and myfortic or cellcept and i have gone through plenty of chemo, but the chemo made me lose wait because of loss of appetite and then the prednisone after all of my rounds made me eat so much, i literally gained 40 pounds of fats from foods and water that is retained. I am really glad that you are happier and healthier! Best of Luck!
I hate having to explain myself because no one can see how sick I truely feel. I feel pathetic. I batteled depression and suicidal tendencies, and a year later from recovering the said i find out I have lupus. WTF. Im starting to think God doesn't want me here and I can't take it.
I'm an Australian with SLE and everyone thats in my life dismiss the fact that i have this and its affecting me they say i'm a hypocondriact. I feel like my body is shutting down and i'm dying on the outside as well as within. If anyone here is from Australia that knows of a lupus group let me know please i live on the Central Coast NSW thanks
"I don't exist" that became the story of my life after I was diagnosed at age 13. I'm 26 now and ready to die. Those who are suppose to love and support me, treat me as though there is no such thing as lupus, it doesn't exist, therefore I don't exist. Love conquers all; but without love I feel I can conquer nothing. Thank you for the video, helping spread awareness. I pray nobody else ever has to go through this alone.
Hey I still have LUPUS! Yeh, that's it. That's why I didn't finish school, didn't go to university, didn't become a ballerina (my dream). Just life with a wolf inside my system, that's a journey itself.
@MantaoManjyu But life with the wolf thought me more than I could've asked for. I am truly thankful for this life, I wouldn't want to change anything. Somehow I became so strong, so loving, it was the greatest challenge and it showed me I am so much more than a body. To learn to trust, to let go, to love are the blessings that came with this life. To become totally free from medicines and choose peace and healthy living was part of the journey. We can all do it by loving ourself no matter what.
Im thankful for this video I have lupus. It took me a long time to accept my illness. It took years of sickness and soreness before they finally gave me a diagnosis in aug 2007.I suffer from pericartitis, lung failure but im going to still continue to live take it one day at a timei have to say " I HAVE LUPUS BUT IT DOES'NT HAVE ME" everyday is a struggle until a cure is found or better medication is made available to help people with this severe illness. Matresa Bronx New York
my sister was diagnosed last year and we still struggling..thanks for all the information and videos about lupus..so we will be more aware in everything we need to know with lupus!!
Awesome video. I was diagnosed with Lupus in 92. Sept/07 I had my first stroke due to Lupus. I have lost some use of my left side, and it gets me very depressed at times. I do thank god that I have regained as much as I have. I believe that my husband has alot to do with my recovery and of course my will. I am not ready for Lupus to take over completely!
thank you so much for posting this video ..... im really greatful and happy that... you guys all of you have the courage to speak out i know it must be very hard and painful too live with this terriable diesease... not only live with it .... but too deal with judgemental people .... please have faith in god and i also wanted to share a health supplment on the market called goji juice it aids in overall health and wellbeing
I felt so validated when the young woman talked about her doctor telling her to seek psychological help, that it was all in her head. That was the worst part for me - as soon as a doctor reached the limits of their knowledge, I was labeled and dismissed. I actually started doubting myself at one point. It sucks to have lupus, but it's great to finally have a diagnosis. Bottom line: DON'T GIVE UP. No one knows your body better than you.
I've lived with lupus for 15 years, and didn't find out until recently exactly what it was. I've had to have chemo.. it's effected every system of my body. Including my kidneys and central nervous system. I'm glad there is actually some information out there about lupus, because it seems some people don't know what it is.
I know what you mean. I am about to have people stand up and listen to all us "LUPIES" because it is TIME for a CURE! I have severe SLE..for the sake of our families we need a cure!
Hello, My name is Cynthia I was diagnosed with Lupus in August 2005. It was very hard for me to cope with this disease because I reaaly have no family, It's just my daughter and myself. NOW I have educated myself and have my sickness under control. Anyone who has this disease reach out to someone don't suffer in silence.
hi my name is mia...this video is awesome. i have lupus myself. i was diagnose 6 months ago. it changed my life forever. thank you for posting this vidoe.
Hi My name is Larry, I was diagnose with lupus in Aug. 1999. I was 35 years old, it's been rough on my entire family. Thank you for posting this video people need to know about this terrible disease.
I think this video is Great. For people who dont know about lupus or has a family member that is sick and dont know what it is. This video is what it's like for people (such as I) who have lupus live like each day.
fucking bullshit, my mom has lupus for 4 or 5 years, and shes suffering so much.
maidwithluv 5 months ago
I got my diagnosis in June this year and I am still waiting to find out how bad it is. I got a rash on my face for so many years ago and my dermatologist thought it was pimples. But then I changed my dermatologist and I got answers to what it was. I am often very tired and my knee has bothered me for many years now, without my doctor found out what was wrong with me. But I hope soon will have more clarity about my lupus
K0MTESSEN 6 months ago
My problem with my diagnosis is that my family and friends do not believe that I am ill. What they can not see, they can not understand. You're not sick, you're just lazy. And must admit that it crushes my heart a bit every time they say that, I really don´t have the right support :-(
K0MTESSEN 6 months ago
I was just diagnosed with SLE Lupus in Aug of last year. We are still trying to find the right treatments for me to maintain the illness. I'm a fighter though and I do have my good days and bad but i am so thankful to have another day with my family and be around those who care about me. We will find a cure! God bless
angelstar1 9 months ago
my mom was diagnosed with SLE 18 years ago....she's so sick and i feel why her? she's a wonderful person..i'm so sad
LuluHeeNim 11 months ago
Yesterday we got a phone call from grandfather, he said it was bad news. My cousin was diagnosed with lupus.
She is 15, and she has trained for many years to become a professional skier. They told me that she must give up that dream now.
I feel sorry for her, but I know everybody in my family will support her, like they supported my mom after she got a stroke in her brain. We are a close family...
I hope she gets better, and everybody else with lupus or a disease.
minimella93 1 year ago
I really do understand candace baptist... It feels like you were robbed of your true destiny. But i applaud your courage and spirit. You are amazing.
TheUntamedH 2 years ago
I'm having my first appointment with a lupas specialist on Wednesday and I am so terrified. I have always been sick and sore off an on my whole life and I'm only 20 and my aunty has it so my doc wants me tested. Even if I don't have it I feel like i must be a hypochondriac and I hate going to the doctors because I always have a list of things wrong.
MissRuthKatherine 2 years ago
what is the song playing in the background? i have heard it before and it is bugging me! nice vid..
warrmh08 2 years ago
hello
TheJABEshow 2 years ago
Hey I am a guy from Canada I was diagnosed with SLE in Jan 2006 when i was 23 years old i have for 3 years now .. but my problem is tht i dont stay on my medications cuz it drives me crazy what can i do i need help plzzzz
aswmy15 2 years ago
Hi there..I'd just find out in November 2008 that I have SLE. I'm 17years old.Before i knew that,i was in the hospital for 5 weeks.I'm still worried about my disease.But I must live with it.I have much medicine that will take care the SLE.One of the medicine is Prednisone.I really can't take it anymore. My face is a lil bit swollen.Some people just don't understand.Sometimes i get mad at myself..but god made me the way I am. Can't help it.I'll have learn to accept the disease and to love myself.
MissRomyy 2 years ago 9
@MissRomyy i know you posted this a while ago but i too take prednisone but everytime it gets lowered for me i get sicker i used to have my face get swollen but it eventually went away, i would like to know now how are you doing because im a male 14 with lupus which is rare
OfficialDJEJ 1 year ago 2
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MissRomyy 1 year ago
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MissRomyy 1 year ago
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MissRomyy 1 year ago
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MissRomyy 1 year ago
@OfficialDJEJ yes it's a while ago when i posted it,untill now i didn't remember i wrote this.It's getting much better with me now,i've stopped with prednisone sinds October 2009,my face is back to what it always was.But i can't get the weight that i used to have..but it don't bother me anymore.I'm much happier and i feel much different without prednisone,it feels like i'm finally my old self again.Instead of pred.i've got Imuran(named in Dutch)right now.The SLE is totally under controle now.
MissRomyy 1 year ago
@MissRomyy oh wow that is good, my doctor has spoke to me about imuran but he never went into details i have prednisone and myfortic or cellcept and i have gone through plenty of chemo, but the chemo made me lose wait because of loss of appetite and then the prednisone after all of my rounds made me eat so much, i literally gained 40 pounds of fats from foods and water that is retained. I am really glad that you are happier and healthier! Best of Luck!
OfficialDJEJ 1 year ago
@MissRomyy I was diagnosed this most recent past easter weekend. Im 19 years old. Im in the same boat girlie. I cant take it anymore either.
betaroars 4 months ago
I hate having to explain myself because no one can see how sick I truely feel. I feel pathetic. I batteled depression and suicidal tendencies, and a year later from recovering the said i find out I have lupus. WTF. Im starting to think God doesn't want me here and I can't take it.
betaroars 4 months ago
@betaroars stay strong dear
i have SLE too and i feel pathetic sometimes
but i know this is just a challenge god gave us
there are many people poorer than us on earth, really
im sure we are chosen to be strong to overcome these sufferings
doris8132 2 weeks ago
I'm an Australian with SLE and everyone thats in my life dismiss the fact that i have this and its affecting me they say i'm a hypocondriact. I feel like my body is shutting down and i'm dying on the outside as well as within. If anyone here is from Australia that knows of a lupus group let me know please i live on the Central Coast NSW thanks
freeby83 2 years ago 2
"I don't exist" that became the story of my life after I was diagnosed at age 13. I'm 26 now and ready to die. Those who are suppose to love and support me, treat me as though there is no such thing as lupus, it doesn't exist, therefore I don't exist. Love conquers all; but without love I feel I can conquer nothing. Thank you for the video, helping spread awareness. I pray nobody else ever has to go through this alone.
arizicho 2 years ago
This says so much.
Lupus has robbed so many of so much.
That's life with the wolf.
elcie0 2 years ago
Hey I still have LUPUS! Yeh, that's it. That's why I didn't finish school, didn't go to university, didn't become a ballerina (my dream). Just life with a wolf inside my system, that's a journey itself.
MommaElin 2 years ago
@MommaElin I wanted to become a ballerina too. The oppurtunity hasn't exactly passed, but i don't see it anymore.
MantaoManjyu 4 months ago
@MantaoManjyu But life with the wolf thought me more than I could've asked for. I am truly thankful for this life, I wouldn't want to change anything. Somehow I became so strong, so loving, it was the greatest challenge and it showed me I am so much more than a body. To learn to trust, to let go, to love are the blessings that came with this life. To become totally free from medicines and choose peace and healthy living was part of the journey. We can all do it by loving ourself no matter what.
MommaElin 4 months ago
Im 17 almost 16 and was diagnosed with lupus when i was 16 and im still on prednisilone....will it stunt my growth!!!!! ;C
YazzieBean 2 years ago
Im thankful for this video I have lupus. It took me a long time to accept my illness. It took years of sickness and soreness before they finally gave me a diagnosis in aug 2007.I suffer from pericartitis, lung failure but im going to still continue to live take it one day at a timei have to say " I HAVE LUPUS BUT IT DOES'NT HAVE ME" everyday is a struggle until a cure is found or better medication is made available to help people with this severe illness. Matresa Bronx New York
tresh4401 3 years ago
yeaa... they should really some up wid sum medicine..
sessias 3 years ago
This video is awesome--great job... I have Lupus... I was diagnosed in my mid-20's after being "sick" and sore off and on for years!
It is amazing how each person experiences it differently but the devastation to the body is equal.
jumpygirl3 3 years ago
my sister was diagnosed last year and we still struggling..thanks for all the information and videos about lupus..so we will be more aware in everything we need to know with lupus!!
pinkzhuttz 3 years ago
Awesome video. I was diagnosed with Lupus in 92. Sept/07 I had my first stroke due to Lupus. I have lost some use of my left side, and it gets me very depressed at times. I do thank god that I have regained as much as I have. I believe that my husband has alot to do with my recovery and of course my will. I am not ready for Lupus to take over completely!
~Rose , Chesapeake, VA
munkysrus711 3 years ago
thank you so much for posting this video ..... im really greatful and happy that... you guys all of you have the courage to speak out i know it must be very hard and painful too live with this terriable diesease... not only live with it .... but too deal with judgemental people .... please have faith in god and i also wanted to share a health supplment on the market called goji juice it aids in overall health and wellbeing
MASIALEE 3 years ago
I felt so validated when the young woman talked about her doctor telling her to seek psychological help, that it was all in her head. That was the worst part for me - as soon as a doctor reached the limits of their knowledge, I was labeled and dismissed. I actually started doubting myself at one point. It sucks to have lupus, but it's great to finally have a diagnosis. Bottom line: DON'T GIVE UP. No one knows your body better than you.
MommaAng 4 years ago 5
I've lived with lupus for 15 years, and didn't find out until recently exactly what it was. I've had to have chemo.. it's effected every system of my body. Including my kidneys and central nervous system. I'm glad there is actually some information out there about lupus, because it seems some people don't know what it is.
181989181989 4 years ago
I know what you mean. I am about to have people stand up and listen to all us "LUPIES" because it is TIME for a CURE! I have severe SLE..for the sake of our families we need a cure!
ajsmommy 4 years ago
I was diagnosed with SLE 3 years ago. Everyday, life is a struggle.God bless to all the people with Lupus and their families.
ilovenoy 4 years ago
This is a great, informative video...But as a man with Lupus, why does no one speak for me?
darylhorner 4 years ago 2
mabey you need to be the one to speak for the men with lupus.
i think you should be the first.
luralisious 4 years ago
The 2008 video has a man named Adam Selkowitz as one of their two stories. Just google SLE Lupus 2008 and it should come up.
amazi27 3 years ago
Hello, My name is Cynthia I was diagnosed with Lupus in August 2005. It was very hard for me to cope with this disease because I reaaly have no family, It's just my daughter and myself. NOW I have educated myself and have my sickness under control. Anyone who has this disease reach out to someone don't suffer in silence.
twscle 4 years ago 2
hi my name is mia...this video is awesome. i have lupus myself. i was diagnose 6 months ago. it changed my life forever. thank you for posting this vidoe.
portuna81 4 years ago
Hi My name is Larry, I was diagnose with lupus in Aug. 1999. I was 35 years old, it's been rough on my entire family. Thank you for posting this video people need to know about this terrible disease.
airman151 4 years ago
hi im marife from phil. i have lupus can you help me to know more information about this?
khalel214 4 years ago
Thank you for posting this!
Bill
Schenectady, NY
kiridoku 4 years ago
I think this video is Great. For people who dont know about lupus or has a family member that is sick and dont know what it is. This video is what it's like for people (such as I) who have lupus live like each day.
lupusurvivor29 4 years ago