Symptoms began at age 10
My son was diagnosed with lupus when he was 10. After years of seeing an army of specialists who never made progress in solving my son's joint pain, fatigue, rashes, ulcers and hair loss, it was a relief to finally find out what was wrong. Now, we can work at giving him as normal a life as we can.
Wendy, United States - California
I'm 28 and have been living with lupus for 13 years. Prior to my diagnosis I was a great student who never missed school. At age 15 I suddenly couldn’t get out of bed because of fatigue and joint pain. Thankfully I had a pediatrician and parents who were determined so I was diagnosed within months and began treatment. Since then, life has been a rollercoaster of good and bad days and a range of ailments.
One of the hardest parts of living with lupus is the medication side effects. Sure they make the lupus symptoms better but there are a list of side effects that go with them. I look at old pictures of myself before lupus and hardly recognize the girl I see. I’ve put on 30 pounds, my face is full, and skin is pale due to my photosensitivity. These physical changes can be very debilitating to the human spirit. I’ve struggled with depression over the years and at times had to take time off to get myself together. I’m a proud person too who finds it hard to ask for help which makes those times that I need help difficult. It is like proclaiming that I’m weak or a failure.
I had to grow up a lot quicker than my peers in my teenage years. I couldn't do the same things that they could. Now I’m meeting all new challenges. My husband is very understanding and happy with our life but I struggle. I really want to have children but know that doing this could risk my own life.
The most important lesson I’ve learned in the 13 years is that I’m LIVING with lupus. It’s a part of me that I have to accept just like the color of my eyes. Somedays I’ll not feel so great and may have to take it easy but that’s just one day. The days I do feel great I have to make the most of it.
Mira, Germany
Her name is Mira and she is 25 years old.
She was diagnosed at the age of 11 with SLE and serious kidney failure. She falls from one inflammation to the next one and lives with this disease like on a roller coaster, always up and down, good times and bad times.
She has learned from this disease to value her life and now sees her life through different eyes.
Mira works as a kindergarten teacher and looks after 25 children, aged 2 - 6, despite her having haemodialysis 3 times a week, for 5 hours each time. The word "Time" now has a different meaning for her but her environment does not understand this. She loves to laugh a lot, let her thoughts wander; she is very spontaneous and very creative. She is very happy to be able to laugh a lot despite her disease and therefore she is very engaged with the German Lupus Group as this engagement is very important for her. Her involvement is a source for her laughter and enables her to find peace with herself.
Tanitha, United States - Pennsylvania
Tanitha was 13 when she was diagnosed with SLE. She loved life and learning. She lived her life to the fullest 
regardless of her illness. Tanitha was an amazing writer, an artist, and very talented photographer with a bright future ahead of her.
Despite frequent visits to her doctors and hospitals, Tanitha was a full time student at Temple University majoring in Journalism and American Studies. She was also an editor at TempleNews, a bartender, a stage manager, an avid photographer, a best friend, and a wonderful daughter.
Tanitha died from complications of lupus on May 20, 2003. She was 22.
The Tanitha Kulsiri Memorial Foundation was formed in her honor and memory. The book Awkward Grace is a tribute to her works and life. All profits from this book will be donated to Tanitha Kulsiri Memorial Foundation and the Lupus Foundation of America.
Joanne, United States - Mississippi
Hi, my name is Joanne, and I am 23 years old. I was diagnosed with SLE about 4 years ago. At first, I didn't even know what it was. My doctors would explain it to me but I didn't understand them. I looked lupus up on the Internet and still didn't learn much. No one understands my problems and what I am going through. It has been hard for me to keep a job because my employers do not work with me when I am feeling bad. It has been really hard for me because I live in Mississippi, and the summers here are very hot. I am on a lot of medication and yet my symptoms are only getting worse. My husband has been very strong for me, and he will not let me give up. I hope we will find a cure soon.
Melissa, United States - Illinois
At age ten I was diagnosed with lupus. I am now 17 and a junior in high school. When I was younger I had more medical issues and took a lot of medication, but it did not seem to bother me much to be different. Now the reality of lupus, I better understand. It is hard at times being different, even though I thought that is what I always wanted. I am an identical twin and my sister Linnea does not have lupus. Being an individual and unique has always been important to me. I do not like to factor the lupus into my decisions but know I need to. I have many goals and look forward to my future. I am graduating high school a year early and want go straight to college.