Thirty-One Faces of Hope: Brandy Sims
The lupus community includes people living with lupus, friends, family, and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Meet Brandy Sims
My sister our SHEro (Eleanor Brooke Bokknight 09/12/1978-09/19/2021) pictured far right
Ever since I was young, I can remember my sister Eleanor Brooke Bokknight being sick and my parents being extremely tired. Growing up when we played together it was always inside because she was extremely allergic to everything and would tire easily, the sun was her worst enemy. When Eleanor was three years of age, she began to drag her leg and they said she was just emulating what she saw on the television. We always had a long running joke that she was a bubble baby. As I listen to many individuals who were misdiagnosed as children, it is my belief that she was showing early signs. The doctors always stated that her symptoms were because she was severely asthmatic, and she was just a child. They would tell my parents she would grow out of it and things would get better.
It wasn't until Eleanor was about 16, a happy and vibrant teenager, that suddenly her body shut down completely. This had never happened before, and my parents were scared and confused. They took her to several doctors, and they diagnosed her with RA b (rheumatoid arthritis). After a year of flare ups and moments of unbearable pain my mother continued to press Eleanor’s physicians about her existing condition and new symptoms that she had noticed. Finally with extensive testing she was diagnosed with lupus. As a family we could finally put a name on what was happening to my sister, and this was now our new norm. It was a lot of sleepless days and nights for us all. Although this disease changed her path it didn't stop her direction.
Eleanor went on to graduate from George P Butler High School in Augusta GA. Her passion and dream were always to do hair. After graduating high school, she attended Dudley School of Hair in Durham, NC where she graduated as a master cosmetologist at the age of 19. She then married a wonderful husband and had two children. She was determined to live her dream of making others beautiful and for 20 plus years she achieved that goal. Eleanor beautified others until standing for long hours and the use of her hands and fingers became too painful and it was becoming harmful to her health. She didn't throw in the towel but found another love through baking which led her to open Elea B's bakery box. My family and I had a front row seat of what difficulties this terminal illness can cause mentally and physically. Some days there were many doctor’s appointments, long hours in the emergency room, days when we had to assist her with all her personal needs (baths, putting on her clothing, hair etc.), and even her baking business when she ever would let us. As a family we couldn't feel the pain, but we took the pressure and supported her through it all. Eleanor was a warrior and a fighter and that is what makes her our SHEro. She inspired many individuals because of her tenacity and will to not let lupus be a death sentence. Eleanor would dress up just to go to the corner store. She would tell us that she was carrying lupus on the inside, not wearing it on the outside.
Eleanor battled this monster for 27 years with grace until she transitioned on Sep 19, 2021, at the age of 43, a day that I will never forget. She would often discuss with me about creating a platform for those suffering with this disease and wanted to call it Disabled Divas. She wanted to educate the world about the ups and downs of lupus and let them know that those who suffer from this disease are the true saying "I don't look like what I've been through and I'm not going to look like what I'm going through". She also wanted to use the platform to encourage others, letting them know how important it is to remain strong, keep your faith, and always lean on your support system as much as you can. We miss her every second, minute, and hour of each day. Eleanor ran her race and ran it well might I add. This has led my family and I to create the Brooke Bokknight Lupus Warrior Memorial Foundation in her honor. Our slogan is "With pain comes strength" because this is what she embodied and showed every day of her life. As we join the walk this year, we will carry her with us in our hearts. We vow not only to pick up the torch but run with it and assist the National Lupus Foundation to bring awareness to the world and help fight this relentless disease one step and dollar at a time.
Thank You to Our Generous Sponsor
Choosing to prioritize your kidney health might be uncomfortable, but the reality is that up to 30% of people who live with lupus nephritis may experience kidney failure, which can lead to dialysis or even a kidney transplant. Luckily, there are steps you can take now that may help, such as scheduling routine tests and asking your doctor about treatment options. Talk to your doctor to learn more about routine testing and treatment.
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