Walk Ambassador Kay Mimms

 In Story Sharing Project

2021 Virtual run, WALK, ride ambassador, Kay Mimms. Team captain and Lupus Warrior for K’s Hope for a Cure.

What kind of lupus do you have?
Systemic Lupus Erythematosus, or lupus, is a chronic (long-lasting) autoimmune disease that can damage any part of the body.

How long did it take for a correct diagnosis?
I have suffered with various lupus-like symptoms since I was four years old. My symptoms included cold hands and feet and sensitivity to cold (since I can remember); painful, sore, and swollen joints and muscles (since the 1960s); low blood count (1960s); extreme redness of eyes (since 1975); thyroid condition (since 1988); itchy and discolored blotches on skin (1990s); blistering after short exposure to the sun (1990s); chest pain with each deep breathing (1990s); itchy, flaky scalp (2005); hair loss (2005); loss of appetite (2005); and extreme fatigue (2005).

All those years, doctors did an excellent job of treating my symptoms; however, many times the old symptoms reappeared, or I’d get new ones. My dermatologists and ophthalmologist recommended evaluations for lupus at different times. I followed their advice, and the results were negative. I discovered later that I didn’t have enough markers to determine a definite lupus diagnosis. I was told I needed to have at least four symptoms happening at the same time. I just continued seeing doctors whenever symptoms popped up. Therefore, I was able to continue my career in education as the doctors tried to keep my symptoms under control.

When I first retired in 2004, life was beautiful. I spent my days being involved in many activities that I was not able to do while working. I exercised four days a week, had breakfasts and lunches with my retired buddies, took advantage of free seminars and workshops, participated in two book clubs, and began traveling more.

When was lupus diagnosis?
Then in 2006 when lupus attacked my heart and lungs, I finally received the definite diagnosis – Systemic Lupus Erythematosus or lupus. But before I could get an appointment to see the rheumatologist, things got worse. I ended up spending over 60 days in ICU, being sedated and intubated intermittently. That means that I was hooked up to various machines and tubes including a breathing machine, a trach in my windpipe, a feeding tube in my abdomen, a catheter in my urinary tract, and more. Doctors presented a very grim picture. They didn’t think I was going to make it. I almost died, but I think God had a plan for me.

(I tell about my struggles, fears, losses, and victories in my first book – FIGHTING LUPUS BATTLES – Hope for a Cure. The book includes more than twenty true stories about real people who are living with the effects of this mysterious and unpredictable disease called lupus. With medical commentary from two of my doctors, as well as general educational information about the lupus disease, the book was written to help raise awareness, broaden knowledge, encourage understanding and compassion, improve provider/patient communication and relationships, and promote research. I’ve just published my second book – FIGHTING LUPUS BATTLES – Living, Hoping, Searching, Climbing, Researching for the Cure. It includes updates from the first book, stories from more lupus patients, and information about lupus research. Both books are available at hiltonpub.com and amazon.com.)

How has your life changed?
Today, my condition is fairly stable. In the process of learning to deal with lupus, I discovered the need to increase lupus awareness, help support lupus patients, and promote research that we hope will lead to more efficient diagnostic procedures, better treatment plans, and eventually a cure. My experiences inspired me and my husband, Cecil, to join with the Lupus Society of Illinois (LSI) in working toward the goal of expanding lupus awareness and fundraising in the Southern and South Suburban areas of Chicago.

We participate in area lupus support groups, represent LSI at various health fairs, and speak at meetings of local organizations and churches. We also serve to help LSI host the Southern Suburbs Illinois Lupus Walk, usually held during May – Lupus Awareness Month. LSI’s Illinois Lupus Walk events are major fundraising and educational activities. The LSI uses the walk proceeds to help fund medical assistance grants, host educational events, empower support groups, and promote research for lupus patients and their families. I think our walk team, K’s Hope for a Cure, plays a significant role in helping LSI accomplish its goals.

As a Team Captain, what are your goals?
I am honored to be the Captain of team K’s Hope for a Cure. We started in 2009 with 25 members and raised over $1000. Over the years, more than 400 individuals have supported our team. Some have even created their own teams, therefore increasing the total number of participants and dollars raised. We usually provide snacks, gifts, and sometimes prizes. Gifts have included t-shirts (one beige with steps to a cure and one purple showing walkers moving toward a cure), hats with a butterfly design, purple sunglasses, fanny packs with attached water bottle holder, sports towels, and crocheted butterflies, combs, and clips. This year, our team goal is to have at least 100 registered walkers and to raise over $8000. I think team members thoroughly enjoy the event and take pride in contributing to such a worthy cause.

What would you want the world to know about lupus?
Many people know few facts about lupus or are misinformed. It is difficult for others to understand what lupus patients are enduring. At this time, lupus is unpredictable, complex, mysterious, incurable, and potentially life-threatening. Yet, there is hope as scientists design observational studies and clinical trials to learn more about the disease. The research goals include creating more efficient diagnostic procedures, establishing better treatment plans, improving patients’ quality of life, and ultimately discovering ways to prevent and cure the disease. I encourage all to get involved by learning more about lupus, participating in research studies, and raising funds that will help to support lupus patients.

Join Kay and hundreds of others by participating in the Virtual run WALK ride for LUPUS! www.lupuswalkil.org

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