Skip to main content
Close
Providing Answers, Support and Hope in Ohio
This is my chapter   |   
Reset

Patient Stories

Want to share your story with us? Go to facebook.com/lupusreateroh and use the heading "What more can I do?" Help spread the word about our mission to improve the quality of life for all people affected by lupus and inspire others to think of the LFA, GOC for their charitable giving.

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."

Dee Hayward
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. Have you had the flu where you ache all over and you just can’t get relief? That is often what lupus is like. 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, or if it will at all. 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.
Dee Hayward
A Lupus Warrior with a fighting family

Thank you for the years of dedication Amanda and her family have provided to the chapter. Meet the Dorsey & Knill Family! They believe in creating awareness for the event to help gather others to fight back with them. The family participated in the Brookpark Home Days parade where they made sure the color purple was seen to advocate for the LFA, GOC while handing out thousands of flyers. This year, they plan to make their efforts even bigger by attending the biggest parade in Cleveland, the Saint Patrick's Day parade. We look forward to seeing a pop of purple on the greenest day of the year! Help cheer them on Sunday, March 17, 2019.

Amanda Dorsey, Lupus Warrior

Amanda and her family have provided a troop to 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!

Amanda's Family

William is Amanda's 17 years old nephew. He currently volunteers in the lupus office. He helped with the 2019 Annual Appeal and helps with data entry. Sweet little Brianna is Amanda's 8 years old niece. She has hosted lemonade stands with Amanda's daughter, Isabella to raise money for lupus research. She believes that one day there will be a cure for her Aunt. Dennis is Amanda's brother-in-law. He participates in the Lupus walk and provides support to Amanda.

Natalie's Story
Natalie
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.
Natalie
Lupus Warrior
Kim's Story

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.

Share Your Story on Facebook!
We Can Do More

Will you consider a gift to our annual giving campaign? Your support will make a real, lasting impact in the lives of those who are still in need. You will help us give hope while we wait for the cause, better treatments and ultimately the cure. And today, you will have done more.

Support Our Mission