Patient Advises Others to “Be Curious” After Potentially Fatal Autoimmune Diagnosis

By Melody Spurney

Scleroderma started small for Denise Douty, 49, of Wichita. Her fingers felt funny after scraping her windshield on a frigid January morning in 2019. Not thinking much of it at first, she assumed it would go away. It didn’t.

Not long after, she began experiencing joint pain, which became increasingly debilitating. As the year progressed, so did her pain. Denise had a job teaching a graduate school class at a Wichita-area college that summer. She said the pain was getting so bad she began to doubt if she would be able to walk across campus. She also worked as a licensed counselor and could hardly show up for appointments because of the exhaustion and pain.

Having no primary care physician of her own, she saw her wife, Cindy’s, doctor, who referred her to a rheumatologist. During the four-month wait for her appointment her symptoms continued to worsen.

“By that time, I thought I was just dying,” Denise said. “I was feeling awful and could hardly work.”

At her appointment, the rheumatologist looked at her swollen, puffy hands and diagnosed her with scleroderma.

“My heart just sank,” she said.

Denise said she had done her own research on Google with symptom analysis websites, which also indicated she may have the rare autoimmune disease that causes the skin to become thick and tight and can also damage internal organs.

“The only answer that kept coming back was scleroderma, and that was something I did not want to have because it is fatal. There’s no cure. It’s extremely rare; extremely debilitating,” she said.

As a result of the disease, Denise said she lost fat, her face changed, her skin tightened, and her fingers contracted. Further testing showed she had the subtype of diffuse systemic scleroderma, which Denise called “the worst type of scleroderma you can have” because of its high mortality rate. She said the average lifespan after diagnosis is two years.

“That was devastating,” she said.

Denise said treatments typically include an off-label use of medications intended for other purposes. She tried taking methotrexate, which itself comes with life-threatening side effects, but the medication didn’t help her. 

Her next hope was to get into a clinical trial. A blood draw was required for consideration, but her veins were so badly compromised that not enough blood was able to be taken, and she couldn’t initially qualify. Her rheumatologist approved a port-a-cath to help with blood draws and eventually was able to give enough blood to qualify for the study. However, because she was the only person in the nation to qualify, the study was canceled.

Turning to the Riordan Clinic

With her symptoms progressing and traditional treatments not helping, Denise decided she wanted to go to the Riordan Clinic. She said her niece had been successfully treated at the clinic for Crohn’s disease, and she hoped to find help, too.

Like her niece, Denise’s care is overseen by Dr. Ron Hunninghake, MD, and the clinic’s Chief Medical Officer. Funding was a challenge, though. Denise and her wife had enough to pay their bills and her student loan debt for graduate school but not much more. Her sister and parents stepped in to help, and she started her treatments.

“At that point, I could barely walk. The skin tightening makes it impossible to bend at your joints,” Denise said. She said her knees and ankles couldn’t flex and she needed help walking into her first visit.

She started with lab evaluation, but the clinic staff couldn’t get enough blood for the tests, and she had to come back a second time to finish.

Denise also had office visits with Dr. Ron, which she called “life-changing” because she felt like a person, not just a disease.

“He was the first person who just wanted to know me as a person,” she said.

Dr. Ron and Denise discussed her life experiences, external environment, internal environment, and her emotional health and how all of those factors can contribute to disease. She realized that she had unresolved trauma and issues that she needed to continue to work through.

“It dawned on me that my internal environment had become a perfect place for disease,” she said. 

At the end of their conversation, Dr. Ron gave her something that she hadn’t had since her diagnosis – hope.

“He said that I could get better. That just changed everything for me. Nobody had told me that. From that moment on, I believed it,” she said. 

Moving forward, Denise said that she focused on getting better instead of being afraid she was going to die. She participated in lab tests to address nutritional deficiencies, levels of toxins and heavy metals, a nutrition genome, and worked on her methylation cycle and metabolic efficiency.

She said better health began emerging, but not without work and sacrifice. One big blow to this baking enthusiast was eliminating gluten and sugar.

“I used to live on cookies. I love my sugar,” she said.

She also eliminated caffeine and dairy as a result of her tests. She now focuses on organic food when available, grass-fed beef, pastured poultry, fruits and vegetables, and coconut milk to replace dairy.

Denise’s love for cooking helped as she was able to create recipes for favorite foods like tacos and nachos using ingredients she could eat.

“It’s a learning process, and it did become a full-time job,” she said, adding that she wasn’t able to work outside of home anyway.

As she worked on improving her health, Denise’s hands began to work better, helping her achieve goals in the kitchen and beyond. No longer unable to tie her shoes, she can now wield her Ginsu knife to do everything in the kitchen any other home cook can do.

“Sometimes, I just have to get creative,” she said.

In addition to cooking, Denise found something to love that she never expected – exercise. Her father fixed up an old exercise bike that had been in his basement and gave it to her. She wanted to do some exercise for her heart health but had never been interested before she was sick.

“The first time I rode it, it was terrifying. I didn’t know if I was going to tear my skin or have a heart attack. I was so deconditioned,” she said.

At Dr. Ron’s suggestion, Denise began using a symptom tracker so she could see her improvements. Her bike sessions began with 15 minutes. She has worked up to 10 miles daily and said she doesn’t feel right on days when she isn’t able to ride.

“I had no idea it would feel so good,” she said. “I was always, like, ‘Exercise, no!’ I hate sweating. But I got to the point that I couldn’t sweat for a while because my skin was so thick. So when I got to the point that I could sweat again, I was so grateful. I was like, ‘Let’s sweat it out!’”

Denise also enjoys gardening and simply moving. She even tried running at home recently, “because what if someone broke in,” she joked.

Currently, Denise comes to Riordan Clinic every other week for Ultraviolet Blood Irradiation (UBI) treatments and is often joined by her sister.

Family Healing

Part of Denise’s path to better health has been addressing the whole person, including past emotional trauma that affected her. 

Denise is one of five children in a large family. She said she felt shame as a normal part of being in the family and dismantling those feelings was a part of her healing journey. She said that her family did not initially respond well to her being gay, and she was alienated from her family for a long time.

“Nobody had the tools to really deal with it, and I understand that now,” she said.

However, they rallied around her when she got sick, which is something that has changed the relationships for the better. 

“I wouldn’t think being sick is a blessing, but it changed everything for me. I wouldn’t advocate, ‘Hey, go out and get scleroderma or another rare disease that’s going to kill you.’ But for me, it has been my path to figuring out a better way and a better me,” she said.

Denise and Cindy have been together nine years and married for about two. Denise’s parents now visit weekly for lunch or to talk or to enjoy the garden. When her sister joins her for her UBI treatments, they sit and talk, and the two then go home for snacks.

“So much healing has come from that. When somebody gets sick, it is such a wake-up call,” she said.

Advice to Others: ‘Be Curious’

In keeping with the Riordan Clinic’s approach to co-learning care, Denise and the clinic team launched what she called an experiment with her treatments. She said that she and Dr. Ron worked together and tried various treatments and dosages based on his suggestions and her feedback.

“You feel like you have an ally in your big experiment,” she said.

Through some trial and error, they found out what worked and what Denise felt was unnecessary. She said keeping an open mind is important throughout the co-learning process.

“You’ve got to stay curious. If you are closed with an idea, that thing that you need might be right in front of you, but you just don’t see it,” she said.

Denise said that although not all of her healing journey has been easy, she is grateful for how far she has come and where she is today.

“I feel super blessed. In a lot of ways, I feel better than I have in many, many years,” she said.

Riordan Clinic patient Denise Douty is pictured in the garden at her home in Wichita, Kansas.

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