I was diagnosed with lupus in 2011 one month before my graduation from college. I started getting really fatigued, mouth ulcers and rashes from head to toe. I tried everything before I broke down and went to the doctor. Since being diagnosed I have started having seizures, and now have thyroid disease. My feet get raw to the point of not being able to walk and I've had ten seizures last year, and three so far this year. I am still living each day to the fullest and I am determined to live.
I'm a wife, mom and teacher. I have Lupus but it doesn't have me! In the past 4 years I've been hospitalized 26 times, endured transient ischemic attacks, a pulmonary embolism, pericardial effusion and more. Lupus has attacked my brain, impacted my personal and professional life but I am lucky to have an amazing support system behind me! My husband, children, family, friends and students have stood by my side and held my hand through the good days and bad. One day we WILL find a cure!
Hi, I would like to share my daughter's story. She is 8 yrs. old & was diagnosed with SLE lupus in April of this year, but has been going through a medical struggle for almost 2 1/2 yrs. now & has been in and out of the hospital. She had a stroke , kidney failure, inflammation of her brain & spine, and seizure's. These are just a few of the struggles she has gone through. Thankfully we're in the best hands for her care. Through all of this, Angelina continues to smile everyday as she battles this disease.
As a baby, my mom said she always noticed a butterfly shaped rash on my face but she didn't think much of it, then when I was 8 yrs. old my mom took me to a doctor they did a procedure on me where they had to take a piece of skin from my face (which was painful) the doctor told us that it was lupus, he was surprised, and said I was the youngest person he knew of with lupus. I'm 29 yrs old now with 5 children and married, I do have my struggles but have a great husband that helps me through.
Hello my name is Tomeka and I am a 16 year survivor of SLE. My story is a very unique one. We all know the many symptoms of lupus, I've experienced some very frightening times battling lupus. My doctors calls me their miracle patient with the complicated body that keeps them on their toes and baffled at times. So much so that a documentary was filmed about me!
I'm Paulyn from the Philippines,22 years old. I was diagnosed with LUPUS in October 2013 in UAE. Living with LUPUS is difficult but it made me appreciate life and the people around me more. Living the right lifestyle and being positive at all times helps a lot, and with God and my family at my side all things are possible.I believe that one day I will be cured and I will live long to see my beautiful child grow. Yes, it effects me here and there but I've learned to deal with it and not let it deal with me.
At the age of 25 on May 20, 2010, following the birth of my youngest child, I was diagnosed with SLE also known as lupus. Subsequently, I was diagnosed with discoid lupus (skin lupus), fibromyalgia, fibrosis, hypotension, hypothyroid, cricoarytenoiditis (Lupus in my voice box) & severe depression. I have been cut, poked and jabbed multiple times. I have stayed in the hospital for several days on end. I wrote a book as an outlet and hoped to inspire.
I am a breast cancer survivor of 4 months and have been living with Lupus for over 20 years. I had to rid my body of cancer, via surgery, but I wondered if my body could possibly endure the complicated reconstruction surgery that I desired. Through answered prayer, I was led to the most skilled team of physicians who worked together with my rheumatologist (of 20 years). Many pre-op tests were run & I was approved for surgery. I had no complications & feel I am stronger then I ever imagined.
I was diagnosed in 2008 while suffering from acute renal failure. After 4 years of self-pity and being mad at the world I decided to get a second opinion and my diagnosis was confirmed. A few months later I found an outlet that allowed me the opportunity to be happy and healthy, Crossfit and the Paleo Diet. Nine months and 30 pounds later, I’m kicking Lupus’ but by living a happy and healthy life.
I was diagnosed in 2002. I was 26 years old. I had recently married and moved to HI with my husband and 4 year old son. The dream life shattered in one afternoon. Months of battling pneumonia only to find out it was an blood clot and pericarditis. 5 days in the cardiac ward and 3 days in the stroke ward at 31. I was given a 5 year life expectancy. I fought to have a baby, and thank God everyday I'm still here to watch my beautiful children grow. I wake up thankful everyday to still be alive and I begin each day with a positive outlook. It's the only way to survive.
I was diagnosed with Lupus in May 2010, 6 months after giving birth to my daughter. My mother had to step in and help me take care of my child, I was unable to due to the pain I was in! Living with LUPUS is difficult! I have my ups and downs with this disease. My child is the reason I WILL NEVER GIVE UP! I know that GOD didn't bring ME this far to leave ME... I Am A Lupus Survivor By Faith!!!
Since childhood, I suffered unusual symptoms thought to be unrelated. As an adult, adding arthritis, chronic anemia, fibro and thyroid disease to the mix was no surprise. By 2007 I found myself a single parent working full time. By 2010 I developed a movement disorder that suddenly prevented me from working at all. In the quest to find answers to the cause of the movement disorder, my lupus diagnosis was made. It sure made things easier to understand, to treat and to have hope for the future.
I am 20 years old, I have struggled with Lupus since I was 14, but am still strong! Lupus gets the best of me with stress, and I have a lot of stress from college. I have been able to stay strong and do the best that I can each day. There is often a lot of times that I feel horrible, my knees hurt too much to want to walk, my hands can't hold a pencil well enough to take notes, my kidneys hurt me so bad, and my mouth burns from sores. But if I can get through college with A's so can anyone else!
I was diagnosed with Lupus (SLE) 10 years ago after seeing several doctors. I am a survivor because although I had to give up the very active lifestyle I had training horses, working in film and TV as a horse wrangler & stunt woman I was able to put energy I did have into new endeavors, such as learning to play bass guitar to exercise my symptom of arthritis in my hands. To give me hope that life as I knew it wasn't over, it was just a new beginning! I'm a grandma to 2 loving boys, I'm blessed!
I was diagnosed with lupus in 2010. That day changed my live forever. From being active to barely getting out of bed. I hurt every day. It is hard and I hope that one day they find a cure. Even though I hurt I still have a smile on my face. I still work because it gives me a reason to get up and not think of how much I hurt. I enjoy my grandchildren and I try to find activities that we can do together. Molly, I thank you for your website. It helps me to know that I am not alone.
My name is Ashley and I suffer from SLE with major organ involvement. It's attacked a number of my organs including my brain. I am 25 and was diagnosed at 22, but I've been sick for a number of years before that. I suffer from seizures, psychosis, terrible headaches, and many other awful symptoms that have affected my entire body. Every single day, even every single minute is a struggle. I've had to give up college, working, and I can no longer drive. Despite all of this, I never give up.
I have seen so many doctors and have had so many diagnoses throughout the years since I was 6 yrs. old, I can't even count them. I have gotten mouth sores so intensely sometimes I couldn't eat or open my mouth. No doctor was able to diagnose me with Lupus until 2 years ago when I was 61 and gravely ill in the hospital. I try to see this as a learning experience. I do what I can, sometimes a little more, and let others help me out. Love to you ALL and thanks for sharing!
I am a 23 year old mother from Namibia living with LUPUS for almost 3 years, but was only diagnosed with it in January 2012. Living with LUPUS is difficult but it made me appreciate life and the people around me more. Living the right lifestyle and being positive at all times helps a lot, and with God at your side all things are possible.I believe that one day I will be cured and I will live long to see my beautiful child grow.
I was diagnosed with discoid lupus many years ago. My sister its systemic. I'm lucky! Many doctors are helping me control. You can fight this! A poem for all of you: Little miracles happen every day , don't let your troubles take you away, just keep working hard as you can and life will be wonderful and grand! Smile!!! Make-up helps!!!
Being diagnosed in 2009 for SLE changed the way I live forever. Not only did I have a wonderful Rheumatologist, my family is very supportive of my ever changing condition. Constant diet and exercise regiments keep me afloat, but my strong Christian Faith has be key for me. No one will really know the pains of this illness but those of us who have it should always keep our family in the loop whether they understand or not. "Knowledge is Power" is what my Mother always says, so I use social media to educate.
Hi, I am Cassie. I live in CT. I am 53 and for many years, I had sores on my body & scalp. I was told I was allergic to everything, but nothing helped. Finally about 10 years ago, the lesions were getting so bad, and then my joints hurt and I could not walk at times, and I also have the face rash and kidney issues, I was diagnosed with SLE. I get weekly methotrexate injections and many meds. I can't catch a break. I am so puffy, use a cane or wheel chair and all I want is one symptom free day.
I was 15yrs when diagnosed. Told wasn't able to have kids. It effects my organs, skin joints. Sensitive to light and heat. At the time chemo therapy was used. 3yrs of it. I'm married with 3 blessed kids of my own. Who would of known. I've learned to live with it as I'm 40 now. My whole family are awesome supporters. Especially when I have my bad days. I live each day to the fullest. Doctor told me once, be happy, live life to the fullest, you will survive each day. Take each day as it comes.
My symptoms of lupus began at age 10. I had so many problems and illness issues but I was not diagnosed until age 30. I had frequent strep throat, fevers, chronic fatigue, kidney issues, malar (butterfly) rash, sun sensitivity, and on and etc. My daughter, age 21, was diagnosed at age 10 as well. She was my 7th of eight pregnancies, and only surviving birth. This was before my diagnosis, so I had a miracle child. Now I live with my illness keeping my attitude in check and giving hope to others I pray. :-)
My Lupus symptoms started about 9 years ago when I was 18 yrs. old. It started with terrible joint pain & me losing 80lbs without trying. I was completely malnourished (from never being hungry or thirsty) I got down to 92lbs I ended up getting MRCA on my two toes which they almost had to amputate. After numerous tests I was diagnosed with Lupus, RA & Pulmonary Hypertension it was in my lungs. Its a daily struggle but I'm not giving up and neither should you! Stay strong warriors!!!
I was diagnosis with Lupus two years ago and it has been an up hill battle ever since. I've had my ups and downs with the disease but, in Feb. of this year I had a seizure and fell in to a coma for two weeks. I had to remain in the hospital for 2 months because I had to learn how to walk and feed myself again. My liver function had failed and I was not able to write but with the help of my family, friends, doctors, nurses, therapists and God I was able to live life again and I'm doing great!
Hi, my name is Lisa, and I've been a patient, student and teacher of SLE since I was 9 years old. Having had SLE for 34 years now, it's had not only it's trials, but tribulations as well. When I was first diagnosed, it took a pediatric physician to recognize the symptoms that I was experiencing, that only had previously shown in women of child-bearing years, and HE and a TEAM literally saved MY LIFE! One moment at a time is my motto to live by!! :)
At a young age I knew something was wrong with me. I had bleeding ulcers, hernia etc. As I got older it got worse, horrible joint pain, hair loss, severe fatigue but I could never find a doctor that could figure out what was wrong. At age 36 I suffered a stroke and had a heart attack. Finally, I was diagnosed with lupus. Several of my sister's have it and I watched two of my first cousins pass away from this before they were forty. I am alive and I have the love of my amazing family to thank.
Hello, my name is Angela Ray I have been living with lupus since the age of 9. I also suffer high blood pressure, diabetes, and pancreatitis. Not only do I suffer from those other diseases I am a kidney transplant patient. Living with Lupus is a struggle so I have to take it day by day. Now, that it is summertime, lupus patients must be careful of the sun and wear sun protection lotion at all times.
I have been a Lupus survivor for 19 years. It has taken me so long to get properly diagnosed. It was with my 4th pregnancy that changed me forever. My OB/GYN doctor noticed the butterfly rash across my face and told me to seek medical attention right away from a specialist. It took years, and 3 rheumatologist before I was properly diagnosed. Now I am on Plaquenil and feeling so much better. I was blessed with 5 amazing children and one adorable grandson even though I lost 2 babies I am, blessed!
Hi I'm joanna. I found out I had lupus in 2012. My regular doctor never could find out what was wrong with me, until she couldn't find an iron pill that would work for my anemia. I was then sent to the Zimmer Clinic. When I was seen there, I fianally found out I have lupus. I've been through several blood transfustions and my liver, spleen, and stomach are inlarged and inflamed. I go through so much pain each day. But I refuse to let lupus win. I will fight this. I have a son to watch grow up.
My name is Brittany. I was diagnosed with lupus when I was 12. I break out in bad hives, have joint pains, swelling and have very bad angio adema also. Because of the lupus, I get pointed at and talked about. I can not go into the sunlight as it makes things much worse. I have to do everything in the dark sometimes. And at times it feels like I can't do anything at all. People always avoid me because they are scared of how I look. I cannot be on steriods because of my diabetes and the other treatments I have to have. I love this page! May god bless you all.
I suffered for over 13 yrs. but was finally diagnosed in 2010 by a dermatologist , with Discoid. Since then SLE, RA, fibro, neuropathy, diverticulitis, a hiatal hernia, and several other things . I have been really sick & have a hard time but my husband has been my rock. He lost his mom in the 90's from lupus and she suffered over 20 something years . I am a warrior & I will stay strong ! God bless all Lupies, fibromites & all other autoimmune's.
12 years ago I was diagnosed with Lupus. As if that wasn't enough, I was told that I'd never be able to have children of my own. To me, this was devastating news; all I ever wanted to be was a wife and a mother. I am so blessed to say that on September 27, 2013 my husband and I will be welcoming TWINS!! This has been an amazing time and I know that GOD has blessed me beyond measure! -Morgan
After having a baby, the Lupus seemed to rear it's head. Those constant swollen glands started to cause fatigue, fevers, wrists and hands swollen, and anemia made lupus fog a reality. Many times an illness put me in the hospital or a day surgery resulted in a blood transfusion. Motherhood is exhausting, but having lupus and ending my day on the couch makes me more grateful for an extra day to watch my healthy kids and observe the gift of each day. I push through the pain -your stories refuel me!
First and foremost I am a mother to 8 wonderful children. Now a mom to 8 and I have lupus. I was diagnosed in August of 2012 after suffering for months with debilitating pain especially back pain, rash, hair thinning and other minor symptoms. This resulted in my leaving nursing school and eventually leaving a part-time job that I loved. Today my symptoms are controlled by meds, a good diet and rest.
At the end of 2011 I was diagnosed with discoid lupus. Over a 3 year period before I received a diagnosis, I had accumulated a bag of antibiotics and creams for facial outbreaks. I went from a very active life to a life of living amongst the walls of my home. I broke down physically and emotionally with no knowledge of what was going on. Finally a dermatologist did blood work and I was diagnosed and he could start helping me. Now all my tomorrows seem brighter! And now I help spread awareness.
I was diagnosed in 2007 with a full butterfly rash, a year after graduating and recieving my Massage Therapist degree. I had signs of it when I was younger but didn't know. It brought my whole world down around me! I later experience bilateral pulmonary embolisms, which collapsed bottoms of both lungs. Later I had to have Chiari surgery because my brain was growing down my spine. I've spent over 6 yrs. fighting for disability! With the help of family and friends I continue to push on and fight!
This is my son Jerrod Jacobs and he was diagnosed with Lupus at the age of 9 years old. It has been a struggle for us every since. Every thing from being on immunosupressive drugs to cytoxen chemotherapy. Jerrod had to give up playing football at a young age due to knee pain and arthritis due to Lupus. But that was a good thing because he ended up picking up Golf and went to college on a golf scholarship. Jerrod then went into kidney failure and I donated my left kidney to him in 2008.
I was in my last 6 months of college and I could not figure out what was wrong with me. It wasn't until after graduation I moved home and was diagnosed with kidney failure and SLE. I didn't know what lupus was. I felt so alone and went into a deep depression. I was 20 and had just graduated college. I felt like my life was over, when it had just begun! With the help of my supportive family and fiancé, I'm in remission and although lupus can make things difficult, Its taught me to live life to the fullest.
I was diagnosed with SLE, RA, SJS in 1999, 2 months before I got married. I was 21 at the time. In 2010 I was in the hospital for six months because I started a flare during a surgery and threw a pulmonary embolism. I was on a ventilator for 4 months. While at the first hospital they told my family I would die, I was flight lifted to Cleveland clinic. I still fight everyday to stay alive, when sometimes I want to give up. I will fight till the end to beat this disease.
I was diagnosed with SLE December 2008, after not knowing why I was always tired and my joints hurt so bad, and were so swollen I could not even make a fist. January 2009 I was admitted into the hospital with kidney failure. I felt like my world was ending. I realized I was not alone, and that with the continued support of family and friends, I will fight. I am a Lupus Survivor.
Diagnosed after the birth of my son in 1989, lupus has been a constant companion! After 2 blood transfusions, lots of symptoms with the possibility of HIV the diagnosis was definitive "lupus". It took me several years to find a rheumatologist that I could work with. I am now on Imuran, anti-viral and Aleve for pain. Lost my eyesight in my left eye and with support from my specialist had a corneal transplant, it's a process & I am feeling very positive. Have a grandson now, life is wonderful!
Hello my name is Amanda Perez. I have been living with Lupus for 11 years now, and let me tell you it's been a struggle. But our Lord has me here for a reason. My family has nearly lost me three times to lupus but I am still here today fighting. With the help and support of my family, I am now doing great! It was very difficult at firts. I lost all of my hair, and was so weak. I have gained, lost weight, and then gained weight again. It has affected so much of my body that I'm not able to do too many things on my own anymore. I thank God everyday for another day. ~Amanda
I was diagnosed with the disease in March of 2006 in Chicago, Illinois. The sad part about this that I was working for a doctor in Indiana that didnt believe I had the disease because I looked fine on the outside, but I was suffering on the inside. I have been harrassed to quit my last job and the state that I live in (Indiana) is giving me a hard time as I try to receive health insurance. The stress of this keeps me sick on constant basis. ~Ida
Hi, my name is Cheryl and I have SLE. I found out that I had it on February 14, 2004 after I went into a coma for 3 days. I was given only a 30% chance to make it through the night...That was 9 years ago. Today I am proud to say that I am doing well and have had no lupus problems since 2006! ~Cheryl
My Mother passed in 1974 from complications of Lupus. She wrote me a note and told me it was better for her to have it then a child or an elderly person. I was 16. She was one of the bravest, most caring people I know. She put up a great fight and she learned as much about it as she could. Which wasn't much. My Dad told me after she died that she wanted to donate her body for research so they could get closer to a cure. We did that and her spirit lives on in you brave folks. Bless you all. ~Kat
First I would like to recognize my wonderful family and understanding, loving husband. They are my ROCK! I thank God for them! I'm a 13 year Lupus survivor! Survivor; one who continues to function. I suffer with RA most but, I find myself grateful for the ability to walk! Thinking positive and looking forward to a better tomorrow, to get involved and informed..mostly, not to give up!
Taking it "One Step at A Time"
I found out I had lupus almost two years ago, my mom has it but she is now in remission. One day I woke up with a rash that would not go away, I had symptoms like fogginess in my head and I would often think that if I could shake my head clear it would go away, dizziness that would come and go for no apparent reason (some to the point I need help walking), and extreme fatigue. I am so tired of being tired I want to have energy to do the things that I want to do but sometimes I just can't.
I have very few memories of my life before Lupus (SLE) because it has been a part of my life since I was 9 years old. 18 years, this disease has been my constant struggle. I have been in and out of hospitals because of it and have had several surgeries to repair joint damage. 6 months ago I gave birth to my miracle baby after years of being told I can't do that. She reminds me everyday that no matter what, life can be and is BEAUTIFUL!
”Before lupus, I worked 2 jobs, played with my 2 kids and volunteered at their schools. Since lupus, I have had 2 strokes, the second putting me in a wheelchair. I became legally blind from the side effects of one of my lupus medications. The fatigue and pain I am in daily don’t make it easy, but the support of family and my friends at Molly’s Fund have been a blessing.” - Teresa
“Lupus has changed my life in many ways. I can’t do the things that I used to do without being in pain and being tire I try to do the best I can, but my life will never be the same. My biggest struggle is probably accepting the fact that I have lupus. It’s a challenge to cope with so much fatigue sometimes. I tell myself it’s ok to ask for help. I have my significant other, family, and friends for support. I’m also grateful for my friends from the Molly’s Fund support group.” - Jennifer
At the age of 27, Molly was on her way to becoming a successful opera singer. One morning she woke up and passed out due to a fever of 104˚ and seven different infections. It took over 14 different doctors before she was finally diagnosed with Lupus. “I had no idea what Lupus was, all I knew was there was no cure and that my life had changed forever.” Due to the symptoms of Lupus, Molly’s dreams of becoming an opera singer were stolen from her and she no longer knew what to do with herself. “Lupus stole not only my health, but my purpose in life. I will not let it control me. I will fight this disease with everything in me and I will win.”
Jaime Gault is the mother of two boys and finds keeping up with the two of them a challenge all of it’s own. While two boys would be exhausting for any mother, this mother has been diagnosed with Lupus for the past five years. Many evening are spent trapped on the couch because she can no longer keep going after an exhausting day. She experiences cold sweats, severe pain, and vasculitis in her hands and toes on a daily basis. Jaime continues to struggle every day with being both a mother and wife. “I want to be the mother my boys deserve, not the mother that lupus allows me to be.” While she smiles through the pain and loves her family, it is still a struggle not to let Lupus drag you down. “It’s so easy to get depressed over all the things that Lupus taken away from you, but if you focus on all the blessings you still have, the days are easier to get through.”
"Lupus impacts my life every day. Each morning when I wake up, I must assess joint and muscle pain, cognitive fogginess, nausea and debilitating fatigue. Then I decide whether I can get out in the world for a couple of hours or if I will need to stay close to bed. The physical and emotional roller coaster is very difficult, but I am lucky to be surrounded by amazing love and support. Thank you to Molly’s Fund.!” -Lisa
“I do not like all the pills I have to take now and my earning potential has declined.” As a mother, her biggest fear is that one of her children will end up with the same devastating diagnosis. As a single woman, she would like to believe that a committed relationship with an equal partner is possible, but how do you explain to that person what living with Lupus is like? “I like to tell people that yes, I have lupus, but Lupus does not have me.” - Anita
“Lupus has been apart of my life since I was 11 years old. That means that over the last 21 years, I have suffered with this devastating illness. I have been hospitalized dozens of times, had numerous surgeries to repair joint & kidney damage and have not been able to start a family of my own…all because of a disease that most people say, “Lupus? What is that?” Never heard of it.” - Kelli
"I was diagnosed with lupus in September 2010. I have skin rashes all over my body. My biggest struggle is learning to live with lupus, and accepting the fact there is no cure for this disease. At any time my disease can flare up and cause medical issues. I cope with lupus by going to support groups and talking to other women who suffer from the disease. The support from my doctors, family, friends, and support groups has given me strength and courage to accept my life with lupus." - Danielle