Chevonia Smith - Advocate

Thank you for taking a moment to let me tell my story. I would like my autoimmune-disease journey, cancer survival, my mother’s story. My desire to become an advocate .

My health struggles began in childhood. Between approximately ages six and nine, I was diagnosed with Juvenile Idiopathic Arthritis. At an age when most children were able to play without thinking about pain, I was already learning how to live with joint pain, inflammation, and physical limitations. As an adult, I continued experiencing serious health problems and was eventually diagnosed with autoimmune and chronic conditions including rheumatoid arthritis, Sjögren’s syndrome, fibromyalgia, Raynaud’s phenomenon, osteoporosis, osteoarthritis, spinal stenosis, peripheral neuropathy, and chronic pain. Some of my symptoms were misunderstood, overlooked, or treated separately before the larger picture of my health became clear. These illnesses have affected my mobility, energy, sleep, concentration, and ability to work full-time, but they have not taken away my determination to keep living and speaking up.

About Chevonia

In 2004, my life changed again when I was diagnosed with Stage 4 non-Hodgkin’s lymphoma. The cancer was discovered during surgery to remove my spleen. During treatment, I experienced a life-threatening reaction to an iron infusion and spent three days in intensive care. I survived cancer and eventually entered remission, but the effects of chemotherapy and treatment did not end when the cancer became inactive. I continue to experience severe peripheral neuropathy, pain, fatigue, and other long-term complications. I consider myself a walking miracle, and surviving cancer gave me an even stronger purpose to use my voice.

I would also like to include my mother’s story. My mother, Lucille Daniel Gaines, was diagnosed with malignant breast cancer. Her diagnosis and treatment were delayed after her symptoms were initially misunderstood or misdiagnosed. She underwent chemotherapy, radiation, and a mastectomy, but eventually entered hospice care. She passed away on September 1, 2004, at only 52 years old, during the same year that I was fighting Stage 4 cancer. Losing my mother while fighting for my own life deeply affected me. Her experience, along with my own, showed me how devastating delayed diagnoses, inadequate communication, and bias within healthcare can be for patients and families.
These experiences are the reason I want to become a patient advocate and eventually establish a nonprofit organization. I want to support cancer survivors, people living with autoimmune diseases, patients with disabilities, and families who feel unheard by the medical system. My goal is to educate people about recognizing symptoms, seeking second opinions, understanding their rights, documenting their care, and speaking up when something does not feel right. I especially want to address racial bias and disparities in healthcare because patients should not have to fight to be believed while they are already fighting an illness.

Trends & Research Insights

Rising Cases: Epidemiological studies indicate that the incidence of autoimmune diseases is rising globally, with some estimates showing a 3% to 12% yearly increase in certain disorders.
Known Triggers: While the exact root causes are unknown, research suggests that genetic predispositions combined with environmental triggers (e.g., viral infections, chemical exposures, and lifestyle factors) spark these conditions

Studies have also found:

Females (63% of those with autoimmune disease) were almost twice as likely as males (37%) to be diagnosed with an autoimmune disease.
65% of patients had one autoimmune disease.
24% of patients had two autoimmune diseases.
8% of patients had three autoimmune diseases.
2% of patients had four or more autoimmune diseases.
The top five diseases based on prevalence were rheumatoid arthritis, psoriasis, type I diabetes, Graves' disease and autoimmune thyroiditis

Autoimmune Disease Worldwide

Autoimmune diseases affect an estimated 5% to 10% of the global population, with over 100 different types of conditions identified. These chronic and incurable conditions are disproportionately prevalent, imposing significant health and economic burdens worldwide

Prevelance:

Approximately 15 million Americans (around 4.6% to 5% of the population) have been diagnosed with an autoimmune disease. Some estimates, which include less severe or overlapping conditions, suggest the figure could be higher than 50 million

Gender Disparity:

Women are significantly more affected than men. About 63% to 80% of all autoimmune cases occur in females.

Co-occurrence:

Overlapping conditions are common; roughly 34% of diagnosed patients have more than one autoimmune disease.

"The greatness of a community is most accurately measured by the compassionate actions of its members." — Coretta Scott King