First Name Last Name City State Country Age Diagnosed In How lupus changed life Vicki Didde Leawood Kansas United States 39 2000 Now I know what my condition is < I can educate myself and begin to understand about my disease. I had to leave my job 3 years ago because I could not perform my job requirements. Lisa Doston Grandview Missouri United States 95 Lupus has changed my life very much as to how I really listen to my body and how thankfull I am to be in remission at this time since 2006 after being treated with Chemothrapy for Cancer. which we hope killed off some of my Lupus Cells. My daughter's are becoming more aware know that they are older and I can stay out in the sun longer also due to proper nutrition and Medications. Jennifer Witte Kansas city Missouri United States 23 2008 I was just diagnosed with Lupus last week (April 3rd). I am literally taking my first step to learn about this disease and take control of it so I can live a better life. I've had symptoms since I was about 5 years old and it's taken this long to get a diagnosis. I would be lying if I said I wasn't scared because this was the last thing I expected to be wrong with me and it's changed my entire perspective on health. I don't really know how to get connected with others that have this disease and I plan to find some support groups so I can learn from others who know more than I do. If anyone has any information, I would appreciate it very much. I don't know how else to contact people with Lupus. My previous attempts to be contacted by the Lupus Foundation haven't been successful so far. jennirath1@yahoo.com Thanks-Jennifer Lena Zeller Higginsville Missouri United States 39 1998 I suffered from this disease along time before my diagnosis. I have had stage 4 kidney failurewhich was treated with Cytoxan and steroids. I was very lucky and have pretty normal kidney function now. I had a condition where Ilost all my muscle control and had to relearn how to swallow and walk. I have had a DVT in my leg. I have Ulcerative Colitis which is another auto-immune disease. I am diabetic from being on steroids non-stop since 2000. Hospitalizations are a normal thing for me. I have anxiety and depression. I have had a few good days but mostley my days are filled with pain. I have a beautiful 17 year old daughter Brianna, who is my angel. She had to grow up really fast. Bri has given up so much because of my illness. We can never go on vacation because Sunlight is a definite trigger for me. She doesn't complain(well not too much). She has been diagnosed with Chronic Fatigue Syndrome and has a positve ANA. The doctors says she is most likely to have an auto-immune disease too. I pray everyday that will not be true. I have another family member who just passed due to heart complications of Lupus and another family member who has been living with Lupus for 25 years. The pain and suffering is not just mine. It is a burden for my family. I have been on disability since 2000,so both of my parents who are of retirement age are both working because of all my bills and medications to treat my diseases. I hav lots of people who care aboutme. I thank the ALR and quickstart kennison for all they do to find a cure for Lupus! Missy Kansas City Missouri United States 2000 Lupus is a very tough battle on a daily basis for me. There are days that I feel “great”, which my definition of great, and a healthy person’s definition very tremendously. (ha ha) But there are a lot of days that it takes everything I have just to drag myself out of bed. The pain, fatigue, and just the blah feeling daily is enough to wear anyone out. But I have learned to live life for each day that I have. And have come to try and live by the motto, “live each day as if it were your last.” I have been battling this illness for about 14 years now, but have only had the diagnosis for about 7 years. I have Systemic Lupus, with major organ involvement, and also 2 blood diseases. I have had to endure many surgeries due to issues that the doctors think may be caused from the lupus including a heart surgery, splenectomy, hysterectomy, and many more. I also spend a lot of time in the hospital, where the nurses are beginning to know me by name. Without the support of my family and friends I do not know where I would be today! I have also found a lot of support through online support groups, and the Kennison foundation. Sometimes one of the hardest things about lupus, is that us “lupies” don’t always look sick, but “don’t judge a book by its cover”, sometimes I look my best on my worst days! I may have Lupus, but I will not let it have ME!!! Parks LaKenya Atlanta Georgia United States 31 2000 Lupus has certainly changed my life in ways unimaginable. I struggle daily with pain, take all different kinds of medication, have undergone a blood transusions as well as two rounds of chemotherapy, etc. I have a 10 year old daughter who sufffers because I suffer. It is very depressing. Johnua Jacksonville Florida United States 17 2006 Lupus has been a very difficult disease. With many visits to the hospital over the year, I have learned to just deal with it. There are so many times when i want to question God and ask him why me, but i know why he picked me. He picked me because I'm special in his eyes. I love the support I get from my family and friends and even from people that I dont know. I have learned to live with Lupus for a year now. I have had my bad days when i just felt like nothing. And some days I feel like how I use to feel a year ago before being diagnosed. To all of you who have Lupus, keep your head up! And don't let Lupus stop you from doing anything! Devon Edwards Milford Kansas United States 34 2006 Honestly, where do I begin? My name is Devon J. Edwards, Sr., a Chicago native currently living in Milford, KS. I was sent here by way of the U.S. Army in 1995. Thanks to the military I have made several tours overseas and to different parts of the country. First, the Navy sent me places like Cuba, St. Thomas, Puerto Rico, and Panama, just to name a few, from 1991-1993 until I joined the Army in 1994. The Army on the other hand sent me places like Korea and again to Cuba. It wasn’t until the attack on the WTC that our deployments had range and depth added to them. By this time I am serving in the Kansas Army National Guard. (HOORAH) We were called back to active duty to perform a peacekeeping mission in Kosovo. I began to experience some minor health issues at that time. Things such as knee pain which I thought to be normal especially after having surgery on both knees and then chest pains, which of course the Army said was anxiety. After returning from Kosovo in August 2005 I began to experience some minor back pains but grew to be more than a minor backache. I visited my family physician and was prescribed pain medication and muscle relaxers. Not satisfied, I went for a second opinion and then a third. I finally came across a doctor who had heard of my symptoms before-extreme fatigue, severe joint pain, swelling of joints (mainly knees and ankles). This particular doctor suggested that I see a specialist, a rheumatologist to be exact and I did. After a few tests he concluded that I had Systemic Lupus Erythematosus (SLE). Not only that but also Lupus Nephritis. The treatment plan that he and the nephrologists came up with was a combination of Cytoxan and Prednisone. Seven treatments later it was a complete failure. Month after month I spent in the hospital with severe symptoms, no relief, blood transfusion, more disappointments and then a new attack on my body, pitting edema. I went from a solid 225 lbs to 300 lbs in a matter of days with nothing but fluid retention in my body. It was so bad that my legs began to leak fluid and the tops of my feet burst open leaking fluid and blood. My heels were cracked open to the point that I could not walk or even put on a pair of socks. I even had a central line embedded in my neck. My situation had me taking over 30 prescribed pills daily. Both doctors came to visit me in my hospital room. I was told there was nothing else that they could do for me. One doctor suggested that I move to a larger city where I could be provided for better. I was then transferred to KU Medical Center in KCMO. My new doctor suggested I try an experimental drug called Rituximab. Even after receiving all the negative side effects such as death, cancer and ulcers I decided to go for it! I must say, it seems to be working. If we weren’t going through enough already with my own personal battle with SLE and the added stress of being medically discharged from the military and forced to medically retire, my beautiful wife has now been diagnosed with MS. Our two children are learning hard lessons about life right now. They have shown themselves to be very strong and supportive. We are facing this battle as a family. Our faith and trust in God and the neverending support of our church, family and friends, helps us continue on. Beckie Kansas City Missouri United States 30 2000 I was diagnosed with Systemic Lupus Erythematosus in February of 2000. I have what are called Lupus anticoagulants. These are antibodies that work against phospholipids (a group of substances in cell membranes), which inhibit blood clotting in a test tube, but may be associated with a higher risk of clotting in people who have them in their blood. Just 1/3 of lupus patients have this, unfortunately, I am one of them. Living with Lupus is a daily struggle. Most people think that those with Lupus may not look sick, but we are. It is a daily feeling of having the flu. Feeling like I have the flu is normal to me. Just making it through the day with only one ailment is a good day for me. It is hard to go through each day feeling what I feel and not wanting to tell anyone. Not wanting to tell anyone because I just want to avoid all the questions. I don't want people to think ...there is always something wrong with her. The truth is, they are right. There IS always something wrong with me, but I have learned to live with it. It has become my normalcy. It not only causes physical pain, but emotional pain, as well. It is frustrating to feel what I feel and have no one understand. The stress of being a burden on your friends and family. I will not even mention the endless medical bills! I could write an entire book about my 6 year struggle with Lupus. When I was first diagnosed, I was told that the odds used to be 50-50, meaning that you would die within 5 years of diagnosis. Today there are more tests, better treatments, and a larger percent chance that Lupus will not shorten my life-span! I have made it this far and I will continue!! I may feel like crap and my bad days may be pretty bad, but I will not succumb to this. Instead, I have become a Lupus advocate and so can you! Caryo Overland Park Kansas United States 1982 It takes a very strong person to be positive when living with a disease that at present has no cure and the only medications available to suppress the disease are extremely destructive to the body. I fight through severe pain and various issues daily. Lupus patients need a compassionate and strong support system to deal with this disease. I am thankful that my husband, Lee, is so supportive , understanding, and a strong advocate to find a cure for this disease. The Alliance for Lupus Research is working extremely hard to provide realistic hope for better treatments and an eventual cure. QuickStart has helped in providing ongoing events to benefit the cause. Eryn Overland Park Kansas United States 29 2003 Lupus is an amazing illness that you learn to live with, side by side. I was diagnosed in 2003 at the age of 25 and everyday I am learning my limitations. I can't move around as well as I use to or do the daily routine with ease as I once did. During my pregnancy I had numerous complications, leading up to a horrible delivery that was 9 weeks early. Two years later, I had a stroke which still causes many problems. Most days I endure the more common annoying problems... joints that stick and ache, fevers that drain you, pounding headaches, and extreme fatigue. I have always been very independent and it has been difficult to rely on others. But, I must. I have a wonderful 7 year daughter who helps where she can and I am thankful to have the support of those who love me. Danielle Kansas City Kansas 21 2000 I was diagnosed with lupus when I was 15 years old. Lupus has changed my life in many ways. It has been difficult to be so young and deal with this disease, but God knew that I would be able to handle it. It has not always been easy for me or my family, but we have gotten through it and we keep on fighting. Overall lupus has made me a better person in the long run - I appreciate life more. Autumn Kansas City Kansas United States 20 2005 My experience with Lupus has been shadowed with God's blessings. He has given me the strength to move forward in the area of the unknown. My family and friends have made my coping a lot easier. God has blessed me with understanding friends and family. Through close monitoring of medications, I am now in remission, and have been for almost two years. God keeps blessing me with amazing people to help me through this journey, knowing that He will never give me more than I can handle. Shimika Kennison Kansas City United States 2003 Being a young mother of 2 active boys, managing lupus has become a significant part of my life. I am currently in remission but I have had several medical setbacks since being diagnosed. Until a cure is found, I know that I must take good care of myself, follow the advise of my doctors, eat properly, and get plenty of rest! Through my faith in Jesus Christ, the strong support of family and friends, and the ongoing research of the Alliance for Lupus Research, I know I will get through this.                 Copyright © 2005, Faces of Lupus , All Rights Reserved.