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New York

LFA, New York Regional Office
(888) 385-8787

Vickey
Diagnosed at 32
We need more awareness about this disease. Many people are unaware of how debilitating it can be. I was diagnosed 16 yrs ago, I had two young children and was worki...
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Maria
Supporter
I was diagnosed with lupus nearly 16 years ago. At first, the illness was visible. I didn't have the words 'I have lupus' written on my shirt. Aside from the fatigu...
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JOYCE
Diagnosed at 40
WHAT CAN I SAY ABOUT A DISEASE THAT IS NOT ONLY A MYSTERY, BUT A MYSTERY THAT MAKES YOU FEEL SO HELPLESS. ONE THAT ATTACKS EVERY ORGAN IN OUR BODIES. FROM FATIGUE, ...
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Jean Ann
Supporter
Lupus can sometimes take years and years to diagnose. I had been hospitalized for all kinds of gastro issues and blood clots before I was tested for lupus and it ca...
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Dee Ann Al
Diagnosed at 36
That it is complicated, and that we all suffer from something. We all need love too. I will not bite, but be understanding if I am in a flare up, that I may not fee...
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lavern gab
Supporter
my nephew is diagnosed with lupus and so far is fighting it .God is so good .I trust that he will break through for many more years .
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Brit6545
Diagnosed at 41
You need to take care of yourself at all times, avoiding those who are obviously sick (coughing, sneezing, runny nose, running to "bat'room".)
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Lucylue
Diagnosed at 16
Lupus is tricky for us and them. Most people look at us and think everything is ok.. but inside we are screaming out due to the pain. And who wants to complain all ...
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Deniz
Diagnosed at 19
I'm extremely new to lupus, and although You can't see my pain the pain is THERE and it's a constant struggle not only with your physical limitations but it puts al...
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Nicole
Diagnosed at 39
The Raynauds phenomenon is so painful sometimes. Its hard to get warm, almost like being frozen in a block of ice.
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sikoflupus
Diagnosed at 49
You cant see lupus, for the most part I look normal. It hurts, you are sick all the time. The medications make a person just as sick if not sicker than Lupus itself...
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Patti G.
Supporter
Last year, I publicly shared some of my story and struggles with Systemic Lupus in an effort to raise awareness. Sharing through the letter was a relief. Much of th...
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Marcia
Supporter
Lupus is a a very curel is not only effects women, men also have Lupus.
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Lupie B.
Diagnosed at 21
I want people to know that lupus is a life-altering disease in more ways than one. My lupus attacked my body in a way that made me realize that I am not superwoman ...
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MW
Diagnosed at 52
Took over 20 years and many misdiagnoses to FINALLY discover what was wrong with me. Instead of having many things wrong with me, I had one disease that affected ma...
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Makemilaf
Diagnosed at 32
Lupus is a very serious and life threatening disease. People who I try to educate seem like they understand but I can tell they really don't see how important it i...
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Donna
Supporter
Lupus does not discriminate on who its victims are. My beautiful 37 year old sister was diagnosed after many trips to the doctors. It was a very frustrating time. S...
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Jennifer
Diagnosed at 30
At age thirty, some strange symptoms started to affect my body in the "prime of my life". Little did I know that I was in a battle that would test my faith, confide...
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Nancy
Diagnosed at 55
Although I was 55 when diagnosed, I probably had it for childhood. Spent so many hours having my sore and swollen joints x-rayed to no avail. At 40 I was sent to a ...
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Gina
Diagnosed at 21
I will like people to know that your life is not over when you have Lupus, and although you may not look sick the pain is still there.
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Steph
Diagnosed at 20
Lupus is horrible disease. It is debilitating, painful, invisible and it has no cure.
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Mandi
Supporter
Lupus is a silent disease. It affects everyone differently. I am lucky enough that I don't have the organ issues, but the fatigue and joint pain is enough to caus...
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pegldy
Supporter
I was diagnosed with Lupus at age 29. I am now 52 years old. I will not go into all the details of what Lupus has done to my body. I do not want to scare other pati...
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Michele
Diagnosed at 42
LUPUS CAN BE FATAL!! There is NO CURE! Don't make light of this horrible disease! I want others to educate themselves on the disease by reading literature or going ...
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Junior
Diagnosed at 11
This ravaging disease is very cruel to live with, from being fatigue all the time to having joint and muscle pain. It consumes you into a deep depression because yo...
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Daquel
Diagnosed at 34
I was 33 when I was diagnosed with my first autoimmune disease, primary biliary cirrhosis. The fought hard to recover from PBC. Just when I thought I could breath...
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Cassi
Diagnosed at 31
Despite medical advances, too little is known about Lupus, and there are no cures. Patients need to rely on a combination of diet and medications with difficult sid...
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Karley
Diagnosed at 14
Even though we might not look sick, lupus affects us in so many ways and makes doing ordinary tasks very difficult. I constantly get criticized for sleeping too muc...
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Cait
Diagnosed at 12
Lupus can pop up and bite you any time it wants to. Lupus is invisible. One minute, I can feel like nothing is wrong with me and I may question if I even have Lupus...
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Veronica
Diagnosed at 12
That you can be very affected by Lupus and not look like you're sick. I feel lousy sometimes and people tell me how good I look. Some of the symptoms of Lupus are m...
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Xtel
Diagnosed at 18
Lupus affects everyone differently. No one can understand their particular affectation like the person who has to deal with it in his/her body every day.
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Sarah
Diagnosed at 25
It can start out as nothing more than simple hair loss and sensitive skin, but progress to something as horrible as constant pain and exhaustion. From the moment yo...
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Chrissy B
Diagnosed at 24
Enjoy every moment and trust your body, if you feel something isn't right, it probably isn't. "I might have to wear the ugly dress, but I don't have to be the...
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ShanikaC
Diagnosed at 29
Lupus is a cruel illness. Being diagnosed at the age of 29 and actually having it 10 years earlier, is kind of sad. It took so long for me to get diagnosed because ...
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Carol O'C
Diagnosed at 57
Lupus is debilitating and changes your life. It can affect many organs, skin, kidneys, eyes, joints, bones and your overall immune system. It can lead to isolation ...
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Cia
Diagnosed at 42
Living with lupus is not easy.. It takes a lot out of you. Some days is harder than others. Your life isn't the same, as the days go bye it's hard to get up and fe...
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Tammi
Diagnosed at 38
Lupus is a disease that attacks without warning. It's a very painful and debilitating disease. It also plays on your psyche. Being in so much pain all of the time, ...
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Marsharee
Supporter
Its not something to play around with!! Days you miss your medicine you will feel it!! Your body begins to hurt and you just feel like you cant move or do anything!...
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BibiBurton
Supporter
My aunt who means the world to me was diagnosis with lupus (amongst 7 others diseases) 9 years ago. She was told she would only have 7 years before she was incapaci...
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Karlene
Supporter
Lupus, is a disease that affects every culture, race, age and creed. As mysterious as he cause can be for this disease, it reaches many of our loved ones. Also som...
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Diana
Diagnosed at 14
Lupus is an illness that affects SOMEONE that you know. Lupus affects 5 million people worldwide and is often debilitating or even deadly, and we have no cure and ...
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Jade07
Diagnosed at 15
Lupus can affect your life in ways you can only imagine. I was 15 when I was diagnosed with Lupus. It affects your bones, your muscles, and your mental state.
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Kelly
Supporter
I have been living with Lupus (SLE) for many years. The battle goes on day to day, some good, some bad. Be patient with me, it's not all in my head. Lupus is rea...
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Vanessa
Supporter
I have been living with Lupus for past 10years It has been a very hard road. I have lost my leg,had three heart surgeries and hip replacement and both shoulders re...
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Nancy P
Diagnosed at 24
I want people to know that we can live with this disease....we can beat this......
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Claire
Supporter
Lupus changes every thing in your life from the very smallest to the very biggest problems. It is like waking up every morning with the flu, it is hard to know when...
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Tammy
Diagnosed at 31
This is a very horrible disease to live with. I was diagnosed at age 31 after suffering 2 heart attacks with no explanation. I later suffered 2 more heart attacks ...
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Leslie
Diagnosed at 27
Lupus is an overwhelming and terribly misunderstood disease. If you ask anyone if they know what Lupus is, they'll either say "no" or "yeah, I know someone who has ...
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Sandra
Diagnosed at 28
Lupus is a difficult condition, that at times people don't understand. At the end of it all, it's up to you as the patient to fight the illness and not to give in....
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vicky
Diagnosed at 42
I want to let people know that living with lupus is not easy. You have to deal with pain, hair lost, spots in your face, rashes all the times. You feel tired most o...
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Christine
Diagnosed at 26
I have been struggling with SLE for 17 years now, not including the five prior years which I was misdiagnosed with RA. I have suffered joint pain, pericarditis, pl...
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Tania
Diagnosed at 42
That I have lupus but lupus doesn't have me. You need to do all that you can to beat this. Raise the bar everyday and remember that yes you can. No is not in you...
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Lakisha
Diagnosed at 19
I want people to know that Lupus is a disease that affect every race,cage and gender. I was diagnosed with Lupus at the tender age of 19. I was pregnant with my son...
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Irma Stgo
Supporter
Was diagnosed when I was 24 been living with it 11 years for the past 3 years I became a lupus walker banding together with my lupie butterfly team.
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janet
Supporter
when your body aches all over,you develope nasty rashes,tired all the time get to a doctor..Unfortunately I have had this disease for a very long time and no doct...
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Cindy
Diagnosed at 27
We may have Lupus, but Lupus doesn't have to have us!
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BEAUTIFUL
Diagnosed at 20
Lupus has many faces and no one who suffers with it have all of the same symptoms because lupus mimicks so many other illnesses. Lupus symptoms can make life so ha...
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Staciekc
Diagnosed at 39
I have Lupus as well as RA so it is Rupus I fight everyday to get through the day. This is a mean disease that comes out of no where. One minute you are fine and th...
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Jamie z
Diagnosed at 16
Most days are painful. But there is hope :)
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ADRIANA AL
Supporter
START TO ACEPT THIS WAS SO HARD, AND SOMDAYS STIL HARD BUT ALWAYS EVERYDAY IS A NEW DREAM FOR ENJOY EACH MINUT AND BE STRONG FOR THE DAYS THAT LUPUS IS MY COMP...
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Theresa
Diagnosed at 29
Lupus can affect everyone! Women, children and MEN!
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Joy
Diagnosed at 38
Living with Lupus is hard. Sometimes I reach out for support, and am so lucky to have a great support system. Other times, I'm in too much pain, feel too sick, or ...
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aneirsis
Supporter
I lost my best friend to Lupus and pray that no one else suffer or die because of this.
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Sharline29
Diagnosed at 22
Hi my name is Sharline Reynolds age 29 I've been living with lupus for the past 7 year it can b very hard sometimes it no joke one day you could be find and the nex...
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precious79
Diagnosed at 29
Lupus is a serious and life changing disease.the symptoms can be very misleading,and you could be suffering from it a long time before you are diagnosed.
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Daphne
Diagnosed at 21
I have been living with Lupus for the last 13 years and I have two beautiful daughters. Taking care of the kids can be challenging but their smile keeps me going as...
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laurennacc
Diagnosed at 19
Lupus is a painful and unpleasant disease. Although the pain can sometimes be debilitating and unbearable, the most important thing you can do is stay positive. Lup...
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Jesi0704
Supporter
Lupus is a horrible disease!!! Dealing with the everyday joint pains since little is not fun and limited my life... Just cause Im smiling and look fine doesn't mean...
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karina
Supporter
lupus effects a lot of different people in different ways, it can cause hair loss, skin lesions aches and pains , tiredness, depression, and so many more. If y...
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Dragonfly
Diagnosed at 30
So what exactly is “Lupus"?I have been asked this question many times.The answer is not very simple,just like the diagnosis.Experts do not fully understand it,eithe...
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TWiles78
Diagnosed at 23
How much suffering is envolved that u can't see cuz we look fine ........ Just raise awareness of others ...
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Newyork922
Diagnosed at 53
Lupus is a devastating illness you never know when you will get hit with a flare or how long it will last or what it will attack next, living with lupus one must ad...
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Jule
Diagnosed at 12
Lupus is a harsh disease, yet I (we are) am still here and I am determined to live a wonderful, creative and victorious life no matter what symptoms manifest themse...
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Christine
Diagnosed at 30
It is not a death sentence but rather a life style change. Sort of like a new chapter in your book of life. You must simply turn the page and forge forward.
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CandaceJoy
Supporter
Living each day with lupus can be a emotional roller coaster, you can cry then be happy. But some days when I feel good I try my best to make myself happy, running ...
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Michele
Supporter
Lupus is a life altering disease. It causes sometimes unimaginable pain and it exhausting! It causes your body to swell and muscle weakness. Lupus is more common t...
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Rosa
Diagnosed at 35
Just because someone does not look sick doesn't mean they are not.
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E'lyse
Supporter
Lupus, doesnt discriminate at all what I it looks like you and me when it hits you least expect it. You can be fine one moment and in joint pain, legions can pop up...
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chris oden
Diagnosed at 38
Lupus is a loss. I might smile, look ok. Underneath my body hurts, my joints ache. My memory is shot at times, and then I feel ok. It’s a minute by minute illne...
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Belinda G.
Diagnosed at 16
That its not a death sentence and you can live a normal life if you just take care of yourself.
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MtnGirl
Diagnosed at 24
Do NOT read old Library Books about Lupus, the outdated information will scare you unnecessarily. Do NOT think you are alone or a victim. Do NOT try to self treat, ...
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lew Anders
Supporter
I never heard of this until a few years ago when a close friend told me she had this and explained the devastating symptoms. I felt powerless not knowing what to do...
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KimB
Diagnosed at 31
Even though I don't look sick, I am sick. My symptoms weren't in my head. Keep looking for a doctor who will listen - they are out there!
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VC August
Diagnosed at 53
Like many diseases that affect mostly women, it is at the bottom of the list for research. It took 52 years for a new Lupus drug to come out.
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Kerryann
Diagnosed at 31
It is amazing how much lupus can change your life if you let it but if you keep informed and take control of your care life can still be wonderful. You have to spea...
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Melissa
Diagnosed at 23
Know more about Discoid and systemic lupus.
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ann ford
Diagnosed at 45
how it can affect your life, and the life of there families
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Ezzie
Diagnosed at 32
I would like for people to know that it can happen to anyone but it's so important to pay attention to your body. When something is not right with you your body let...
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Roxanne
Diagnosed at 44
Having Lupus changes your mental and physical outlook on life.
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Rachel R
Diagnosed at 16
We WILL find a cure.
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joyce
Diagnosed at 39
There are days when you realize just how beautiful and exciting life can be, and then there are those lupus flare up days when you literally just want to throw the ...
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dddeven200
Diagnosed at 47
i was diagnosed with lupus after suffering a mini stroke they say that my blood is too thick therefor im on blood thinners for the rest of my life
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DORYS
Supporter
all about the lupus because a lot of people dont know nothing about lupus and more women in this world suffer for this and they dont know what is lupus ....now that...
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Jennifer
Supporter
If u feel it than it's the truth don't let any1 tell u different! If ur doctor doesn't feel right get a 2nd opinion!
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dmthea
Supporter
Lupus can be a very debilitating and draining disease both physically and mentally. Even if someone looks like their ok it doesn't mean their not going through some...
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genie
Diagnosed at 27
Like mny diseases Lupus doesn't always have a recognizable face.It's a chronic autoimmune disease n doesn't discriminate attacking any part of ur bdy.Lupus is oftn ...
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Jesi
Diagnosed at 6
Living with lupus is very hard and discouraging.. But we have to be strong and keep trooping... Even though were in pain alot but there is always someone who has it...
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Tiffany821
Diagnosed at 18
Lupus is a scary disease and difficult to live with. The joint pain, stiffness and damage the sun can do makes normal everyday things most people take for granted e...
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janeyis
Supporter
your tired usually and fed up with so many meds and treatments. your always hopeful even though you wana give up
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Dlayne
Diagnosed at 43
Lupus is Pain, it is devastating. It affects each person differently. Please understand when we say some days I/We cannot do a certain thing. Please do research,and...
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Allie76
Diagnosed at 25
That you can still LIVE and enjoy life!
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Toni Mineo
Diagnosed at 50
The worse thing that you can do is define yourself by the disease. I am not lupus, I am a wife, mother, daughter, and piano teacher that happens to have lupus. If...
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ariadne
Diagnosed at 46
I want they know that lupus is not contagious and is not a kind of cancer . Anyone could have it and u immune system is overworking is not hiv or sida .
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Talkgirl
Diagnosed at 23
The real facts.
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Aisha Chou
Supporter
Lupus does not have a cure and it effects thousands of people everywhere. People should come together and find a cure for lupus, because it would help the lives of ...
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Judy A.
Supporter
Lupus is completely unpredictable + sometimes relentless. Just when you think you're over one problem, another one creeps up and smacks you down...or at least trie...
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Bobbie
Diagnosed at 58
There are so many mimiced symptons that can easily lead to other dx's. Listen to your body and your head. A lopt of people around you will doubt yu. Do not scorn t...
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XWingMitch
Supporter
Although Lupus is a debilitating disease know that you have support everywhere from a lot of people!
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Teri
Supporter
Lupus is different for each patient. Because the symptoms can mimic those of so many other illnesses it can take a long time to reach the correct diagnosis. Even ...
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El
Diagnosed at 50
Lupus is not the end of the world and remeber when you have a good day embrace it!!
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Carolyn
Diagnosed at 25
Its been hard but I have the love of my family.
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Tammy
Diagnosed at 30
I want people to know that it is real. Everyone who has Lupus is affected in a different way. People look at us as if there is nothing wrong with us. There is docto...
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cj,bklyn
Diagnosed at 32
The pain is real and not imagined. If someone says they are in pain and hurt and even the smallest things are hard for them to do, don't tell them it is all in thei...
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Megan
Diagnosed at 17
Lupus is difficult to deal with physically and mentally, unless you have it yourself it is very hard to completely relate to some who does. You may look like you fe...
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Kirkus
Diagnosed at 40
Lupus does not discriminate I've had it since 2004 but wasn't diagnosed til 2010 men get it too and its not easy there are a lot of sacrifices and changes you must ...
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Trayray111
Diagnosed at 25
Lupus manifests itself in so many ways. I had mouth sores, joint pain, weird infection and skin bumps...it also goes misdiagnosed for a long time. In my case - 7 ...
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Morningsta
Diagnosed at 55
Since age 55 (it might have been earlier) I have been living with lupus. I have no septum, have some mucle athrophy. Have had trouble with pinched nerves. Am und...
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Stephanie
Diagnosed at 22
I knewLupus has affected me in was such as, brain fogs,confusion,pain through out my whole body, extreme fatigue. To live with lupus you need to leanrn to understan...
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Elizabeth
Diagnosed at 42
Lupus has changed my life. I’m only a shadow of who I used to be. I’m learning to cope with the new person I’ve become and some days are better than others. On my w...
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Lisa H.
Supporter
This disease touches many families from young to old, to those who suffer from and other who have to take care of the one they love you have it. I want people to be...
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Paulette
Diagnosed at 35
Lupus affects everyone who has it differently, and is life threatening. I have SLE and developed ITTP which affected my blood so bad I almost had a stroke. Through ...
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SUSAN D.
Supporter
I recently was diagnosed with Lupus, but it took over 5 years to diagnose. It was so frustrating to know it was autoimmune and something was wrong, but 9-10 doctors...
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VC
Diagnosed at 49
I went through hell getting a diagnosis. I had Lupus symptoms since my late twenties and never got a correct diagnosis until I was 49 years old. If you think that y...
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christine
Supporter
my daughter alysa's lupus took 7 years to diagnose, which was very frustrating. but at least now we know what is is and can try to deal with it together...
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DeShon
Diagnosed at 19
Lupus is a struggle and it takes time to learn and recognize your personal symtoms of a flare up. But with help from doctors and support and love from friends and f...
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Nancy
Supporter
That Lupus is more common than people think. People need to be aware and be tested. It can affect anyone. It doesn't discriminate, young or old, man or woman or c...
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Sarbear123
Diagnosed at 26
Lupus can be a devastating disease that needs to be brought to attention. 50 years without any progress in medicine or research is far too long!
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nancyvener
Supporter
I am doing great now, I have had 3 bad flares, but have been in remission for about 25 years with no complications. The last flare I had I was 34 was in the hospi...
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Val
Diagnosed at 46
Mornings are the worst part of the day.
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Tressa
Diagnosed at 18
Living with Lupus is a daily challenge. There is no cure for this unpredictable illness. The most effective "treatment" is wellness education and communication. It ...
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Sharon
Diagnosed at 45
It can be treated and you can overcome the odds! It is very rarely fatal and with new research you can live a long life.....
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Kathy
Supporter
I am living with Sub-acute cutaneous lupus erythematosus (SCLE). My form of Lupus makes me extremely photosensitive. I always have to protect myself against the ult...
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Sunnybug
Diagnosed at 38
That it affects each of us completley different, and the years it takes to get properly diagnosed needs to change. It took me 5 years and several doctors to figure...
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Lauralei
Diagnosed at 29
No two people are alike. Symptoms can be similar, but this disease affects every person differently. If someone you love has lupus, PLEASE do a little research. D...
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go-chakra.
Diagnosed at 28
I have discoid lupus overlap, I get severer pain threw out my body. So I have learn to slow down and not react to negative energy. I have learn to mediate to take ...
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Betty
Diagnosed at 41
Lupus is not contagious and it's invisible. If you don't know about it, ask us. Don't pass a quick judgement, when you have no idea how Lupus affects us. Lupus take...
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phoenix
Diagnosed at 20
Lupus is a disease that can affect any part of the body. The effects can be devastating. Some people become incapable of holding a job because of the toll that the ...
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SammyJ
Supporter
It's an unpredictable disease but it can be managed if need be.
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Lilli Sara
Diagnosed at 40
Its a terrible, chronic disease that has no cure and effects not only the patient, but all those who love her (or him). It strikes predominantly women in their chi...
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Mageela
Diagnosed at 35
I may not look sick but I struggle with Lupus. You wouldn't tell someone suffering from cancer that they don't look sick. However, don't treat me with pity just un...
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marhansen
Diagnosed at 38
most people assume that if we look and act fine that we are. they really don't understand the disease and the toll it takes on lupus sufferers and their families. s...
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Dina
Diagnosed at 20
Lupus is such a devastating disease.Anyone can get it and it's so unpredictable.I am so happy that there is finally so much support for this terrible disease.I hope...
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Beth
Diagnosed at 32
That Lupus needs more research and awareness to get more people to realize how this disease impacts a persons life.
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Theresa
Diagnosed at 14
It is a difficult disease to live with. I have been under control on medication most of my life. 40 years now. I have had 3 hip replacements due to avascular nec...
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Mark
Supporter
I am glad that there is a new treatment for lupus.
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Laura
Supporter
The Lupus Foundation of America is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus and providing support, ...
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Veenie Jo
Diagnosed at 44
Lupus is a pain!
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Kathy S.
Diagnosed at 43
I want people to know that underneath the rosy faced , smiling woman are many tears. Also that if I say I can not do something today, please don't ask me over and o...
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