Patient Spotlight: Paul, Dermatomyositis Ambassador

Jenny Johnson, Vice President and Assistant General Counsel at Keenova is alongside dermatomyositis patient ambassador, Paul. 

Dermatomyositis patient ambassador Paul addressed the Keenova team during a company meeting. He spoke openly about his lengthy, difficult, and inspirational journey to better health, as well as the support he received from his family, community, and our Keenova team along the way.

A minister from Dallas, Paul agreed to a short interview to share his story with others. The responses in this Q&A have been lightly edited. Paul is being compensated by Keenova for his patient story. 

Can you tell us about your life before your diagnosis? 

Throughout my life, I had always been pretty healthy. As a child, I rarely got sick, and I felt invincible as a teenager. In my 20s and 30s, I hardly had to go to the doctor. I stayed active by playing basketball, traveling, and running from time to time. I poured my energy into raising three beautiful kids with my wife and being involved in our church community. 

When did you notice that something felt different, that there may be an issue? 

When I turned 40, I began noticing some changes. It started with shortness of breath—just little moments at first, like needing to sit while preaching or feeling winded more often than usual. I chalked it up to getting older, “This is just 40.” Turns out, it was the start of a journey I never saw coming—one that would test my faith and lead me toward a deeper purpose in life. 

At first, my shortness of breath was easy to dismiss. But then one day, while I was working at the local community center, people noticed one of my eyes was swollen. I reached out to my sister, who’s a physician assistant, and she encouraged me to see an allergist. At my appointment, the doctor gave me an allergy test, and the results came back saying I was allergic to just about everything. I started going in quite frequently for allergy treatments, until my sister asked if I’d had any blood work done. Well, I hadn’t, so I went back in and requested a blood test. Two weeks later, the results showed abnormalities, and I was referred to a rheumatologist who did additional tests—both blood and urine. 

How did you receive your diagnosis?

When I went to my appointment to review the results, the doctor began by saying, “Your test results show that you have lupus and possibly cancer.” I thought, Wait a minute! I just turned 40. I have a wife and three kids, and we have a future planned. We want to go on family vacations and buy a house. Now I might have cancer? It was a lot to take in. 

The rheumatologist and I started discussing treatment options, and he wanted me to see a dermatologist for a second opinion based on my symptoms. Around this time, my condition was getting worse. I noticed swelling in my face and my eyes. I took my test results to the dermatologist and felt a wave of relief when she told me, “I don’t think it’s lupus, and I definitely don’t think it’s cancer. Let’s do a biopsy.” About a week later, when the results came back, I went to her office, and she told me I had systemic dermatomyositis. 

How did you feel after receiving your diagnosis?

I couldn’t even pronounce the name of my condition, but the dermatologist was amazing. She explained that dermatomyositis is a rare autoimmune disease that causes muscle weakness and a characteristic skin rash, and we discussed all the ways it might impact my life. I had already developed a rash on my back and my fingers, scarring and sensitivity on my fingertips and knuckles, discoloration at my hairline and neck, and skin so sensitive that a hot shower felt like lava. My kids had to be careful just holding my hand because one squeeze could really hurt. I’ll never forget how awful I felt having to pull my hand away from my daughter’s because the pain was too much. When I went back to see my rheumatologist, he agreed with the dermatomyositis diagnosis, and we discussed the next steps—more tests and finding a treatment that would work for me. After that, things slowly began to change. Eating became difficult, and I couldn’t swallow certain foods without washing them down with liquid. I developed inflammation in my joints, which made it difficult to put on clothes or even walk at times. I started treatment, but adjusting to the medications was challenging. I worked with my doctor to modify my treatment plan, but there were still moments that tested my patience and resilience. My doctor ordered several tests—on my lungs, my esophagus, my stomach—and they all led back to dermatomyositis. 

How did you deal with navigating these symptoms? 

I found myself in a really dark place, searching for clarity. Why did this happen to me? Not long before, I had been playing basketball, lifting weights, and racing my kids down the street. Now, when everybody else stood during church service, I was left sitting. 

I vividly remember one particularly tough day. I was sitting by the window, 12 stories up, receiving an infusion treatment. The sky was blue, and I could see the clouds floating by as I talked to my cousin on the phone. She was sharing words of encouragement, telling me to hang in there. When we hung up, tears rolled out of my eyes. I couldn’t understand why my body wasn’t working the way it was supposed to. 

What kept you strong during this timeframe?

I held on tightly to my faith, but I felt my hope slipping. I was afraid that dermatomyositis would define the rest of my life. 

Then came a breakthrough. After a few months with my rheumatologist, who I don’t think I clicked with, I spoke with a woman who had the same diagnosis as I did, and she told me great things about another doctor. I learned that my cousin also knew this other doctor and thought highly of him. Talking to two people with no connection to each other about the same doctor felt like fate. I wanted to believe I was being led to the place that I needed to go. 

Now, this might sound unrelated, but stick with me for a moment. I’ve played a lot of basketball in my life, and I’ve experienced firsthand how the wrong coach can have a negative impact on the success of the team. But with the right coach, who brings out the best in both the star players and the benchwarmers, that same team can turn into champions. 

How did things change with your care plan? 

When I went to see this other rheumatologist, it felt like I had finally found my coach. He took his time, listened carefully, and truly got to know me and my dermatomyositis. He gave me something no doctor had ever given me—hope. We discussed nutrition, carefully reviewing the foods I should and shouldn’t eat, and we adjusted my treatment plan. 

When it was time to start treatment, a Nurse Navigator from your company guided me through the entire process. The support I received from her gave me the confidence I needed to move forward. The Nurse Navigator did not provide medical advice and told me to talk with my doctor about my medical questions and concerns.

Over time I experienced steady progress. I returned for bloodwork and was told that my test results had returned to normal levels. My condition appeared to be well managed, according to my rheumatologist. 

How are you doing now?  

Looking back, I never could have made it this far alone. I leaned heavily on the support of my family and my faith to carry me forward with every step I took. My church, my kids, and especially my wife were my strength when I felt weak. My wife handled all the household duties, attended appointments with me, and motivated me every day. When I didn’t look or feel like myself, my kids were right there encouraging me, “Dad, you look great!” Everything that I went through, my family endured right alongside me. 

My church community surrounded me with inspirational messages, meaningful connections, and prayer when I needed it most. I’m incredibly proud of the way I held on to my faith throughout my entire journey, and I never let dermatomyositis stop me. I preached with a swollen face and went out into the community on days I was in pain. No matter how bad my symptoms were, I kept going. And now, I continue on, so that I can remind others who may be facing a similar challenge that there is a reason to fight. 

My journey with dermatomyositis has taught me that there is power in sharing stories. By speaking up, we create awareness, foster connections, and build a community where no one has to face this disease alone. My greatest hope is to help others see that no matter how tough things get, there is always a reason to keep fighting, and there is joy to be found. I’m grateful every day for the support I’ve received, and I’m determined to keep sharing my story to inspire hope in others. 

Do you have a message for the Keenova team?

What you do matters.