Meet Edward Pruett: Advocate and Relationship Builder

One afternoon, 12-year-old Edward Pruett III was heading over to a neighbor’s house for a game of football, when he noticed something odd. His tongue kept brushing against some slick spots in his mouth. Edward went back home to tell his parents that something didn’t feel right. When they looked inside his mouth, they were shocked to see that it was almost entirely black.

Concerned, his parents rushed him to the doctor’s office. They started with a simple blood test, only to discover that Edward’s platelet count was nearly zero. An ambulance was called immediately, and he was transferred to a large hospital an hour away. There, doctors quickly diagnosed him with Immune Thrombocytopenia (ITP), a rare blood disorder that prevents blood from clotting properly. Diagnosing ITP often involves ruling out other conditions, so it took a while to get to the bottom of things. Unfortunately, the doctors had a tough time figuring out the root cause of Edward’s ITP. He was placed in a private hospital room labeled as a hazard, and the doctors and nurses wore full protective gear whenever they entered.

After running countless tests, including a bone marrow biopsy, Edward was diagnosed with Mixed Connective Tissue Disorder (MCTD) and was sent home on extremely high doses of prednisone.

Years later, when Edward was in his twenties, his rheumatologist diagnosed him with systemic lupus erythematosus (SLE). Though MCTD would always be a part of Edward’s health journey, his primary treatment focus shifted to lupus. When he received the diagnosis, he was told that his experiences with the disease had been relatively mild because it was combined with MCTD.

Living with and Overcoming the Challenges of Lupus and MCTD

“Overall, my number one issue is malaise. I often just don’t feel well,” Edward explained. “The biggest trigger for my lupus flares has always been unnecessary stress. Regular stress, like from work or business, doesn’t bother me much, but stress from unnecessary sources can cause a flare. Being out in the sun also triggers my symptoms.”

In his hometown in metro Detroit, Edward is a committed community advocate who tirelessly champions the causes important to his neighbors. Known for his outspoken and energetic nature, Edward is a familiar figure in the community. While this level of involvement would be exhausting for anyone, it can be especially taxing for someone with a chronic illness if not carefully managed.

Edward finds that sleep is his most effective remedy, especially when the seasons change and storms come and go. Just like a barometer senses shifts in air pressure, Edward’s body can feel these changes too. For him, most flares require plenty of rest to subside. He also has to eat regularly and consistently, which helps reduce his lupus symptoms.

His joint issues, fortunately, are rare, but when lupus flares hit, Edward experiences confusion and difficulty in thinking, forming thoughts, and communicating. He also notices flares during seasonal changes.

Edward shared that one of the biggest challenges on his autoimmune journey is taking medication every day. While his medication is beneficial for prevention, constantly managing his diseases feels like a burden. Since his flares aren’t overly frequent, he uses a medication called Plaquenil to help his body return to normal. At lower doses, Plaquenil is tolerable, but at higher doses, it can cause problems. With his lupus symptoms, he experiences eczema hair loss and eyelashes falling out sometimes requiring additional medication. Edward would prefer taking medication once a week or month, so it’s less of a reminder that his body needs extra help.

After living with this disease for 30 years, Edward has learned to recognize the patterns in how his body responds to triggers and what helps him relax. Another challenge Edward faces is the countless doctor’s appointments he needs to stay on top of—eye, ear, skin, and joint check-ups—often waiting over 6 months to see some specialists, which can be incredibly frustrating.

When asked what has been instrumental in helping him navigate and adapt to living with autoimmune diseases, Edward’s answer was simple: “Prednisone has been a lifesaver. While corticosteroids can have long-term side effects, they do the job for me due to the infrequent nature of my flares.”

Strategies for Living with Autoimmune Challenges

Edward’s advice to a newly diagnosed patient is this:

• Take one day at a time. Plan rest days and prioritize sleep.
• Follow your doctor’s advice.
• Be engaged in your treatment. Be involved in the process and understand the process.
• Ask a lot of questions.
• Don’t hesitate to ask for help.
• Reach out to family and friends. Let them know what you’re going through so they can support you.

“Understand that most people won’t fully grasp your illness,” Edward noted. “While they may mean well, their advice might not always be suitable. Learn to take their advice with a grain of salt, and do what you know is best for you. Many people, because they can’t see your disease or symptoms, struggle to believe you’re sick, but you know your truth.”

Another thing Edward recommends for new patients is supporting causes that champion lupus research and eradication (or whatever disease you’re facing). Being involved in understanding your illness can help you remember that it’s only a part of your life, not your entire identity.

Talking about his conditions has also been a huge help for Edward. If you are a person of faith, that can be very beneficial. Edward himself serves as a minister and has built many important relationships inside and outside the church.

Joining autoimmune communities is essential. By raising awareness, advocacy becomes easier. You connect with others who can help lessen feelings of isolation. Your presence and involvement can guide someone else through the unknown, which is why Edward is open about his autoimmune journey.

“Living with diseases, especially one unique to you, it’s comforting to know people are standing together, fighting for you even if they don’t know you. It gives me hope that the future will be brighter for myself and all autoimmune disease patients. The Autoimmune Association works diligently to provide information, resources, and resolutions to autoimmune issues, bringing hope to many patients like me. Seeing all they have done and continue to do gives me hope that more organizations and individuals will advocate fiercely for everyone.”

Finally, Edward’s advice to other autoimmune patients is to be okay with uncertainty. Being scared is okay. You don’t have all the answers, and that’s okay too. Take things one day, even one second, at a time.

Try to push yourself, but gently. If you set your alarm for 6 a.m. and can’t get up, try 7 a.m. or 8 a.m. Give yourself grace. Keep trying.

Create patterns and success routines for yourself. Be content with where you are now. Communicate with and listen to your doctor. Make your care a partnership. Retain your autonomy; don’t feel like you’re being dragged along as your body fights battles you can’t control.

“Find connections with people and build healthy relationships. It can feel like a lonely road, and people might not understand what you’re going through, but if you build relationships that allow you to support each other in various ways, they’ll understand and be there when you need them,” Edward said.