Jennifer's story

It all started when i was just a child in 1989.I had been the picture of health not a thing wrong with me except the usual childhood ailments like chickenpox and a broken leg from a field trip i was once on.
But when the lupus started being involved was in 1987 on my mother's second wedding honeymoon(she HAD to take me because she had no one to watch me). Anyways,we had rented a mobile camper van and driven down the west coast of the United States and went to Disneyland.
Everything seemed fine until one unusally warm day when it seemed like i had heat stroke and so my mom told my stepdad that she was taking me back to the van to "cool down".
I don't remember much between that time and time i got diagnosed. I know in 1988 my mom and my stepdad had moved into our first house and i was in grade 6.Just starting out at a new school.And every once in a while i would get the typical symptoms of Lupus(but i didn't know it at the time). And after school i would get so tired that i had to "crash" at the end of my parents bed on the floor. I would spend what felt like hours there on the floor and the sun always seemed too hot and unbearable.
One night during that period of me "crashing" at the end of my parents bed (and that one night i was sound asleep in my bed) my mom woke up and said something like she knew that my kidneys were failing. She then made a appointment to my pediatrician and she told him what had been going on and he said that it sounded like a illness he knew quite a bit about(Lupus) and were sending me to a specialist at B.C. Children's Hospital . We went to the emergency room where the specialist was waiting for me and after a bunch of tests, on Mother's Day,1989 i officially got diagnosed with Systemic Lupus Erythematosus(SLE). And after the doctor diagnosed me with that he informed my parents that it was a incurable disease and that the kind of lupus i had could attack any vital organ in my body.AT that time they discovered that it "attacked" my kidneys.And he also said that i would most likely have 3 "flare-ups" and after the 3rd my kidneys would shut down and i would be put on kidney dialysis.
Between 1989 and 1993(when my life would chage forever) i was admitted on and off,given steroids and then in the Spring of 1993 i had the 3rd flare-up.I went from a fairly normal 150-155lb. 15 year old and in a matter of 3 months my kidneys failed and then on July 10,1993 my kidneys i started kidney dialysis.
This is where i have remained for most of the time since.Except for a 7 month Kidney transplant i had in 1997 at the age of 19.And in November of 1997 i went back on dialysis where i have remained ever since.And because of the drugs that i was put on for the Lupus it damaged both of my hips and both of my shoulders and for about 10 years i had to spend time in a wheelchair. But even though what i JUST told you might seem awful there has been good things that have happened.The First, one i am MOST happy about is that i have been able to keep my SLE in TOTAL remission since 1993!! And as for the Thing about my joints being a problem,Since moving to Nova Scotia in 2004 i have had them replaced :)
The prognosis for the Lupus is STILL good :) STILL in total remission and for now that is the way i want to keep it.
I hope this will help you some.

Sincerely,Jennifer White