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Angie’s Story (Lupus)

Purple RibbonMy story began in 1980 when I was 8 years old. I developed a rash that my mom thought was poison ivy…turned out it was Lupus. Sitting in the dermatologists office feeling confused and lost watching my mom cry, all these questions flooded my mind, first and foremost was “Am I going to die??” I didn’t ask because in my gut I knew I would fight with every ounce of my being to survive. Since it was 1980 no one really knew anything about lupus and researching on the net was out of the question so I was left to be the “kid with lupus”. If only people knew what I was going through and could understand…

Life went on and the years passed. At the age of 16 I began to swell and sleep a lot. I missed most of my sophomore year of high school because I was so sick. I went from doctor to doctor and was told at this point that I have RA and mixed connective tissue disease. I didn’t care what I had. I just wanted the doctor to fix it and make me feel better.

Years later after getting married and having two kids (age 25), Lupus reared its ugly head again. This time I was in so much pain I could barely function. My kids were 3 and 7 at the time and I honestly didn’t have time to get sick again!! I went to my family doctor who knew nothing of Lupus (I am guessing here due to my experience). I was swollen and hurting and she told me that it was “all in my head” and sent me home with anti-depressants!! I knew that there was something wrong, after all its MY body!! Long story short, I went to the ER and was finally diagnosed with Autoimmune Hepatitis (due to Lupus). I was placed on the UNO’s transplant list where I waited 3 years for a new liver.

On Feb. 17, 2001 I got a new liver and then my world crashed. It started with a grand mal seizure, then my lung collapsed, I developed a brain bleed, and I also have neuropathy due to the chemo and plasmapheresis (consists of removal of blood, separation of blood cells from plasma, and return of these blood cells to the body’s circulation, diluted with fresh plasma or a substitute).

After 3 months in ICU, physical therapy, being on oxygen, and losing my hair to chemo, I left the hospital to live life with my new liver. Might I add that this doesn’t happen often during a transplant, in fact the doctors said that it would only happen to 1 in 500 million so if you need a transplant please don’t let me scare you. So thats my survival story. I did it and I am still fighting like a girl!!

Submitted 8-19-10

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.


  1. Cheryl

    Awesome testimony sister ! God Bless You ! Cheryl

  2. Lori G

    Lupus came into my life after 3 nearly back to back pregnancies. My left leg was swollen and painful. I lost pigment in my face and was bone tired. I also would get very ill after sun exposure. The Dr said I was depressed because my Navy husband was deployed. I knew they were wrong. When will the medicine community believe that we know our bodies better than they? I hear similar stories all the time.

  3. Shelia Burns

    No one can understand the dailey fight we have I was diagnosed 10 years ago but only in the last 2 years has the disease really got me none of my digestive system works any more I have developed gastric pyresis I have a stomach drain tube a tube to put medicine in a clostomy bag and Im fed through ivs 12 hours of everyday through a port because my veins callapse and I suffer with migrains my fight is almost over. Its harded everyday.

  4. Mikki

    Inspiring story! I too have Lupus and it is a painful disease. God Bless You!

  5. Janice Oakley

    My story started with my Liver, all they could tell me was Autoimmune hepatitis, was in and out of the hosptial for 17 months . then I got the rash and was sent to the dermatolagists and they thought Lupus right away sure enough SLE.

  6. Tonya Oldfather

    I was just recently diagnosed with SLE. I have been having problems seems most of my life but it mostly started in 2006. Started off with my vision being blurred and having these “white out” sessions, then I began to get dizzy almost 24/7. Few years after that I noticed that I started having to eat differently. Mostly carbs would upset my stomach and left me to feel like crap that later on found out I had a stomach infection and an ulcer. I have chronic kidney stones since I was about 20 and migraines that started around the same time too. I had no insurance and the clinics did all that they could do to figure out what was wrong, which they never could. I was always “Clinically” fine. Just recently 3 months ago I was told I have Lupus. I am pregnant (34 weeks now) and have gotten on state insurance. Due to recurring urine tests they found I had a high amount of protein; from that they have done extensive blood work that came back mostly positively abnormal and with my symptoms to diagnose me with Lupus.

    All my life I have been always tired, always feeling like I have no energy and since the age of 16 I have had chronic sore joints and muscles. The only time I have had a rash on my face is when I was born, the DRs thought it was an allergic reaction to the bedsheets at the hospital…it looked VERY similar to the butterfly rash that is seen in LUPUS. Your stories are all comforting but at the same time very scary. I see what most of you all go through…and wonder is that what Im headed for?….Drs tell me not to look to the net for support but who can I really go to? No one understands what Lupus is around here or they tell me they have friends or relatives that had Lupus and lead a very normal life and are “unharmed” by it.

    I just want to say THANK YOU for fighting like a girl!

  7. abby

    I wus diagnosed with lupus 2 yrs ago…it took a yr to be diagnosed..i feel like crap everyday…if i do get some energy then im down for a couple days for having one day of depresses me to feel this way now 34 weeks prego and have just had enough!!! I cant even afford insurance to get treated..and these Drs. dont even kno what to do to help you..i mean isnt that why they become Drs. is bc they want to help people? Or is it for the pay check? I truly can not take this anymore!!!!

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