Patient Perspective: Support Program Helps Patients with Lupus Manage Their Disease, Improve QoL

Tonya Hinton-Green, a resident ambassador of the National Lupus Foundation of America, was diagnosed with lupus at the age of 22. She recently presented “How Becoming Engaged in My Care with Specialized Tools and Support Helped Me Find My Personal Lupus Triggers and Regain Control of My Health” at the American College of Rheumatology (ACR) Convergence 2022 to highlight the challenges facing autoimmune patients and technological innovations, including Mymee, a specialized care and support program focused on helping patients with both autoimmune disease and long COVID improve quality of life, that have allowed her to gain control of her disease and improve her quality of life.

Tonya Hinton-Green, resident ambassador of the National Lupus Foundation of America

Rheumatology Network: Can you tell me a bit of background on your own personal lupus journey?

Tonya Hinton-Green: I was diagnosed with lupus as I celebrated my 22nd birthday and I was pushed into a world of medications and doctors’ appointments, becoming an invalid and isolated from family, friends, and coworkers for about 9 months.

I was weak and I had no energy. I couldn’t stand on my own, I couldn’t eat and drink, or keep anything in my system. I experienced debilitating headaches, chronic fatigue, and weakness in my hands. At one point I developed cotton wool spots in my eyes, which resulted in 3 separate laser eye surgeries. I lost all my hair, and it grew back in a completely different texture.

After my diagnosis, I was sent to a rheumatologist for help, but I wasn’t getting any better. Instead, I became totally bedridden and because I couldn’t keep food down, I lost an extreme amount of weight. Out of desperation, I sought care from a different rheumatologist. He gave me a new perspective and new medications that made a tremendous difference. Within a year, I was back at work and resuming some of my regular activities.

My medications changed through different phases in the first 4 years following my diagnosis. Then, when I became pregnant with my daughter, my health took a turn for the worse. The only medication that I could take during my pregnancy was a high-dose steroid which caused skyrocketing weight gain.

I started having unbearable migraines and it felt like no matter what I did, I couldn’t find relief. My migraines became so bad that I lost my job. I was completely sidelined, frustrated, and in dire need of help.

RN: When was the turning point when you decided to become your own advocate?

THG: I became involved with the Lupus Foundation of America Tri-State chapter in the early 2000s. Initially I joined to learn more about lupus and any resources offered, but then they asked for volunteers and it kind of started from there. Once I began to attend health fairs and spoke with my partners and other participants, it became obvious to me that I was missing from my care team.

All of this happened before I lost my job. I was in my early thirties and had begun working my way up the corporate ladder. I decided I needed to learn how to take control of my health became curious about holistic health and how nutrition and supplements could help me with my lupus symptoms.

Around this time, I heard about a program called Mymee, that combines 1-on-1 health coaching and personalized data analysis to help you find your triggers and manage your symptoms. I learned through working with Mymee that different aspects of my diet and environment could be contributing to my symptoms based on sensitivities associated with my disease.

RN: What are some of the specialized tools you used to regain control of your health?

THG: When I joined Mymee, I was struggling daily. I started working with my coach to decide what symptoms, foods, habits, and other aspects of my life I should be tracking on a daily basis. In addition to being a certified health and nutrition coach, she brought a lot of experience helping people with complex rheumatic diseases like lupus. She helped me feel heard and asked all the right questions to understand my specific symptoms, as well as my medical history and personal health goals.

A core part of the Mymee program was a simple mobile app that my coach was able to personalize and adapt to help me capture the most relevant information on a daily basis as my situation evolved. This made it really easy to quickly track everything I needed to in real time, which is crucial in connecting the dots to find correlations based on timing between your triggers and symptoms. The more I tracked, the easier it became to find patterns in the data to find specific correlations. During our weekly sessions, my coach and I reviewed the data and discussed what appropriate diet or lifestyle adjustments I could make as we began to identify triggers in my food and environment. This was a process of making incremental changes until I understood what adjustments helped me feel better.

Working with Mymee taught me about listening to my body to search for clues that can help me predict and control my flares. One of the hardest things about living with lupus is the uncertainty about bad days that just come and go. Not knowing when my next migraine is coming or what makes me too tired to get out of bed one day but not the next, is incredibly disempowering. It makes it difficult to make plans or commitments. Once you can connect the dots to figure out your triggers, it’s like finally solving a big mystery so you can start living life on your terms.

RN: What advice do you have for patients who have been recently diagnosed with lupus?

THG: You need to be your own detective. Learn to listen to your body and read as much as you can about your disease. Research all of your medications and side effects. Plan ahead of any doctor's appointments to remember any changes to your health, symptoms, or questions that you may have. Don’t try all of those promised fads, diets, and fixes. Love and be patient with yourself and your chosen circle of support and lastly, give yourself grace.

RN: Is there anything else you’d like our audience to know?

THG: One of my biggest lessons I learned is that feeling better is possible. I carried a lot of guilt and shame about not being able to control my symptoms, which usually meant canceling plans or skipping family dinners or events. Rheumatologists can encourage their patients to understand how diet, sleep, stress, toxins, and other specific triggers hidden in their food or environment play a role. These triggers are different for everyone. Having data that I could share with my rheumatologist during appointments also improved our relationship. I now hesitate to make decisions concerning my health without consulting with her first. As an advocate, I try to help patients understand that when you’re living with a serious disease like lupus, if you can’t figure it out, you and your behaviors are not to blame. Discovering your unique triggers can feel frustrating but with the right tools and support, it is possible to find answers. You don’t have to do it alone.