My lupus story started well before I was officially diagnosed in May of 2013 at 32 years old. I was suffering from joint pain and couldn't understand why, at such a young age, I was having this pain. One day, I woke up to go to work and couldn't get out of bed. I thought it was the flu because I was in horrible pain and had severe fatigue. However, after several tests and hospital visits, I was informed by my rheumatologist that I had lupus. I was so misinformed in believing that only women could get lupus. I eventually came to accept that I had the disease. I've had depression, blood clots, heart and neurological issues. Flares usually include hair loss, so now I keep my head bald. I continue to work full-time, but there are periods where I am forced to take time off due to a severe flare. I go to support groups to deal with my illness and get educated. I also have tremendous support from my wife and daughter who are extremely understanding. I have made it my personal mission to inform and educate people about lupus because so many people don't know what it is.
My journey actually started at 16 when I was diagnosed with Raynaud's disease. I wasn't diagnosed with lupus until age 21. Since then, it has been an up and down journey with a lot of challenges. I've dealt with a wide range of issues including migraines, arthritis, lupus nephritis, tachycardia, autonomic dysfunction, and vasculitis. Two years ago, I even shaved my head because I had severe hair loss for 8 months. My treatments range from 20-some pills a day to multiple doses of IV steroids to IV biologic treatments. I recently began immunoglobulin replacement therapy that will be once a week for the rest of my life. While lupus research has certainly come a long way, long term immune suppression from steroids and other medications still have a high cost to patients, with complications such as osteopenia at the age of 31 and now losing my immune system completely. Raising awareness is incredibly important to me and gives my journey purpose. My mantra is always continue to - Fight * Live * Love!
My name is Natalie, and I have had lupus for about 20 years. Through no genetic correlations, over the years I have developed type 1 insulin resistant diabetes, Hashimoto's thyroid disease, gastroparesis, nerve damage, fibromyalgia, gallbladder issues, and heart conditions requiring a pacemaker, along with other miscellaneous malfunctions as I like to call them…I am not the average 30-year-old; most do not understand my daily struggles or fears of not being able to wake up one day. It is a hard and lonely path for those with “invisible” illnesses. A cure feels unlikely after all these years and I begin to question how functional I will be in the next 10. We shouldn't have to feel this way way though. We need answers and we need hope to sustain us in our journeys. We need good medical care and insurance that doesn’t require a fight at every step. Not every day will be easy, but every day shouldn’t have to be this hard. On the outside all seems well, but on the inside, I fight every day to appear healthy and get through the day so that I can get through the next.
My life is a three-ring circus...at least that is what it feels like some days. I never know what the day may bring or if my body and mind will cooperate. Having lupus means the immune system is overactive and tends to fight healthy tissues and organs instead of outside invaders like viruses . . . I have found I can’t really predict the good days or the bad days, or how lupus might affect me from one day to the next. The uncertainty in making plans, going on vacation or being mentally sharp in an important work meeting, can be overwhelming and exhausting. The newest act to my circus is peripheral neuropathy. Partially numb toes and fingers, painful tingling up my legs or arms and the occasional jolt . . . But it all makes me PAUSE. Stop and look around and enjoy the good. Look and see if I can help someone else. We all have junk in our lives. It can be overwhelming, when all we see is OUR junk. Focusing on others can help put our messes into perspective . . . Take care of YOU, but don’t let the YOU be so overwhelming that you can’t see there are others around that could benefit by your act of kindness.
Amanda's Strong Support System
Meet the Dorsey & Knill Family! Amanda and her troop help educate and provide lupus awareness. Kathleen is Amanda's sister and her #1 cheerleader. She supports her sister mentally and physically. Most often, Kathleen goes with Amanda to her doctor's appointments. Kathleen focuses on keeping up with research and attends the patient and caregiver classes. She wants to be the most informed to help her sister fight back and take charge. These two are fierce women fighting lupus together! William is Amanda's 17 year old nephew who volunteers in the lupus office. Sweet little Brianna is Amanda's 8 year old niece. She has hosted lemonade stands with Amanda's daughter, Isabella to raise money for lupus research. Thank you for the years of dedication Amanda and her family have provided to the chapter.
Meet Kim Ennis! She is a strong and passionate lupus advocate. In the summer of 2015, Kim was searching for answers. She needed to know what lupus is and how she can better manage this chronic illness. Kim found a supportive community to not only help her understand, but also help her to find her own voice. Through her journey of fighting back against lupus, Kim has empowered herself with education. She has attended all the local educational summits, participated in the Ohio Lupus Needs Assessment, and regularly attends support groups. She has networked in health fairs and helps spread the awareness of lupus needs in our community. While Kim waits for modern science to help the lupus community, she has decided to support the Lupus Foundation of America, Greater Ohio Chapter by being a lead community volunteer. In addition to charging our state capitol to support other lupus patients, Kim helps to fight back against lupus every day. Please help us thank Kim for her time, compassion, and dedication.
Kiara Herbert's Supportive Daughter
In 2007, Kiara had a blood clot and stroke. On November 4, 2008 she was diagnosed with lupus SLE and has been handling the ups and downs of the disease for 11 years. One of Kiara's daughters, Shyla, is only 9 years old and is already doing so many positive things. Shyla is a smart and outgoing lupus advocate, supporter, and model. She has been doing lupus photo shoots since 2015. Shyla has been a big supporter in Kiara's life while wanting to make a difference in this world. Kiara feels blessed to have Shyla because she reminds her that no one is in this fight against lupus alone. There is no "I" in lupus, but there is an "US."