“As Dean’s illness progresses, living each and every day is precious. We don’t take it for granted.”

Georgette Bridger and her husband of 27 years, Dean, live in Suffolk, Virginia. Together they have four children and a dog Annabell. Dean was diagnosed with scleroderma in 1997 and pulmonary arterial hypertension in March 2016. Georgette, Dean’s advocate and caretaker, shared their story with the Right Heart Blog for Scleroderma Awareness Month.

By Georgette Bridger
From the moment I spotted him on the volleyball court in the fall of 1991, I knew Dean was rare. Dressed in a neon green t-shirt and black and hot pink-striped athletic shorts, he definitely wasn’t one to be overlooked. I, however, overlooked his obvious lack of fashion sense, and two years later we were married.

Three years after vowing to love and honor each other in sickness and in health, Dean was diagnosed with a rare autoimmune disease called scleroderma. Scleroderma causes cells to produce collagen as if there were an injury that needs repairing. The cells don’t turn off as they should and make too much collagen. The extra collagen can prevent organs from functioning normally.

Shortly after Dean’s diagnosis, he went into remission, and the manifestations of his illness typically were a mild annoyance. For example, his fingertips would turn blue in cold temperatures and were somewhat painful. So we modified our outdoor activities during the cold months and learned to live according to this new reality and the minor aggravation of his disease.

When reflecting back to those years, I don’t believe we were in denial. But because he wasn’t really symptomatic, we dismissed the disease and went on with life. Then in May 2014, everything changed. Both of our fathers died within 10 days of each other from sudden illnesses, and the stress caused the scleroderma to come out of remission with a vengeance.

The disease was no longer a mild annoyance. Dean’s fingers developed severe ulcerations that quickly became gangrenous, and the pain was excruciating. His disease appeared to progress rapidly. In a two-month period, he was hospitalized three times, each time for several days. Eventually, he also was diagnosed with pulmonary arterial hypertension (PAH), which can be common in some patients with scleroderma.

Gaining access to the appropriate treatment became our priority. I learned that rare-disease treatment options can be rare depending on where you live. After much research, I found the scleroderma program at Johns Hopkins University Medical Center in Baltimore. We travel five hours to receive specialized care and treatments.

Rare-disease insurance coverage also can be rare, so I repeatedly appeal insurance decisions until the insurance companies pay. Or I find a charitable assistance fund to offset some of the significant costs. Knowledge and understanding also can be rare, so I search out support groups and relevant research. In the beginning, learning to navigate the maze of information and discern what is credible and reputable was stressful. Thankfully, I found the Scleroderma Research Foundation and the Pulmonary Hypertension Association.

As Dean’s illness progresses, each and every day is precious. We don’t take living for granted. We don’t think in terms of what Dean can’t do. We focus on what he can do, and we cherish his independence.

We are fortunate to have found an all-inclusive network of specialists, care providers, charitable organizations, professional organizations and more. These resources are empowering and provide us with hope for today, tomorrow and the unforeseeable future.

Our message to all who have taken on the passionate mission of finding a cure for a rare disease: “You are our lifelines. On those days where it feels like we have fallen from the highest point of a mountain and plummeted into the depths of a black hole, we have hope knowing that you are hard at work, earnestly searching and moving forward in your efforts toward finding a cure. We thank you!”