Creating Space for Our Caregivers

“When one person gets sick, the entire family gets sick.” 

Rachel Meyn Ugarte is no stranger to the nonprofit world. As Chief Development Officer of La Clinica del Pueblo, a full-scope community health center in Washington DC, Rachel understands the importance of telling stories that demonstrate an organization’s impact. But when she shared her own story with the Foundation of how she and her family have been affected by scleroderma over the years, storytelling hit home in a way it hadn’t ever before. 

Rachel’s mother, Elizabeth “Eliza”, was diagnosed with scleroderma in 2007. 

“My mom was 62 or 63 and was extremely active. She was hitting a chapter in life that we thought would entail traveling a lot and visiting me and my siblings. We had all these visions of how life was going to be for her.” 

But those dreams were shattered when scleroderma began taking a toll on Eliza’s body. Initially, her fingers would swell, but the symptoms soon progressed to facial tightening, hand involvement, spinal fracture, and leukemia among other complications. 

For Rachel, scleroderma meant having to trekking back and forth between Washington, DC, and California, multiple times a year for many years to help care for her mom and support her family. 

“For two years, it was just constant. My husband and I made the big decision to move to Cali with our toddler because mom would be in the ER and we all thought death was imminent. She was on hospice three times, but then would bounce back. I think each of us began wondering ‘When do we get a break from this disease?’ because it had become all-consuming and dictated many life and financial decisions over those twelve years.” 

Although scleroderma attacked Eliza the hardest, everyone in the family was impacted from it. 

“A disease like this—a chronic condition—is so degenerative and there’s no cure. When one person gets sick, the entire family gets sick. My family and I have all gone through so many cycles of grieving. And scleroderma has consumed us for so long. We felt totally overwhelmed. We did our best to manage a disease that changed course constantly. But we were always waiting for tests. Always on edge. There was always this sense of dread.” 

Family members and friends of someone who has been diagnosed with scleroderma are not exempt from its devastating effects. While a scleroderma diagnosis can be very overwhelming for both the individual and their family and friends, the National Scleroderma Foundation can help everyone find their best path forward. 

Currently, a handful of National Scleroderma Foundation chapters run support groups for caregivers in their area or for a subset of caregivers such as parents of children. Over the years, though, many members in our community have expressed interest in starting a national support group all caregivers who care for people impacted by scleroderma. Though, many members in our community have expressed interest in starting a national support group all caregivers who care for people impacted by scleroderma. 

“We’ve never had a formal support group for scleroderma caregivers based out of the national office,” Caryn Anatrillo, Manager of Advocacy and Support, and Angel Soto, Associate Director, Education and Mission Delivery, said. “For many years at the National Scleroderma Conference, we would hear from community members that they wished one would exist. But leading a support group is a significant commitment. Finally, after several years, a strong leader emerged, one who is passionate about caregiving, can lead the group for at least one year, and who could go through our 13-week SPIN-SLEED training program to ensure they provide the best support to our caregiver community.” 

The National Scleroderma Foundation is proud to announce that, by January 2023—the start of the Foundation’s 25th anniversary year— we will launch our first national support groups for caregivers led by Debbie S. Haussler of the National Scleroderma Foundation Ohio Chapter, whose husband has been living with scleroderma for many years. 

“Debbie is amazing,” Caryn and Angel said. “She currently leads a support group for caregivers at her place of work, but she is ecstatic to launch a support group for the Foundation for all those who care for and support people specifically affected by scleroderma.” 

What Rachel said about scleroderma resonates so strongly: when one person in a family gets sick, the whole family is impacted. But the Foundation is proud to say that when someone with scleroderma gets our support, the whole family gets it. And not only the whole family, but friends and other caregivers as well. 

For more information about the National Scleroderma Foundation’s support group for caregivers, please email Caryn Anatrillo, Manager of Advocacy and Support, at canatrillo@scleroderma.org, or call (800) 722-HOPE (4673).