New Support Group Facilitator’s Unique Journey Provides Hope and Support to the Community
At a younger age, Ava Nusblatt aspired to be a doctor. When their mother, Ilene, was diagnosed with scleroderma in 2008, Ava had to learn quickly about supporting another person’s medical needs.
“I admittedly knew very little about medicine,” Ava recalled. “But I wanted to help my mom and people like her.
At age 10, Ava was already providing support for Ilene’s care. “I helped my mom with medical needs like spiking IV bags, organizing her medications, and even attending pulmonary rehabilitation classes with her.”
During that time, Ava and Ilene became engaged with the scleroderma community and the National Scleroderma Foundation. Ava organized a team for the Stepping Out to Cure Scleroderma walk for years, raising more than $25,000 for the foundation. In 2014, Ava and Ilene were selected to attend a rare disease advocacy summit on Capitol Hill They were also featured in the Scleroderma Voice magazine in 2016.
Scleroderma affected Ilene’s lungs, skin, and eventually her GI system. Ilene’s health began to decline.
“In 2021, we determined that [she] was no longer able to tolerate one of her lifesaving medications,” Ava says. “With limited treatment options available, there was only one option with the possibility of improving her rapidly deteriorating condition: an autologous stem cell transplant.”
Ilene became known amongst her medical team as a ‘unicorn.’ No scleroderma patient had ever previously undergone a stem cell transplant at her age and stage of disease progression.
After a full year of recovery from the transplant and working tirelessly to build her mental and physical strength, Ilene was surprisingly diagnosed in early 2023 with stage IV lung cancer, which had metastasized to her brain.
“The pre-existing fibrosis in her lungs from the scleroderma had concealed the cancer on all of her scans, which left it unchecked for what was likely at least a year,” Ava said. “Her strength was overflowing and unparalleled until the end, even amidst cognitive and physical decline.” Ilene passed away on February 24, 2023.
After Ilene’s passing, Ava continued to have a call to provide care and support.
In graduate school, while Ava was better understanding their own identity within the LGBTQ+ community, their interest in working with the community became clear.
“A particularly impactful experience for me in my early years of training was working at a mental health clinic in San Francisco for people who are HIV+,” Ava said. “I worked with many older people who survived the HIV/AIDS epidemic. Hearing their stories alongside witnessing the medical complexity of living with HIV and its comorbidities felt reminiscent of my own experiences of caretaking for my mom.”
Now, Ava has completed graduate school and is furthering their expertise in clinical psychology. Ava credits their passion to the many conversations they had with Ilene.
“It was always very important to my mom to be open and honest with me about what was happening to her medically and emotionally. As such, I was having complex conversations about mortality and resilience from a young age. I think that helps ground my work with other people who may be experiencing similar things.”
Ava continues to provide support to the scleroderma community. Ava is the new facilitator for the Foundation’s LGBTQ+ support group. Ava is a proponent of dedicated spaces for LGBTQ+ people to come together.
“With this group, LGBTQ+ people who are impacted by scleroderma know that they are not alone, and that they can get much needed crowdsourcing and social support from other people who understand their unique identities and experiences,” Ava said.
Ava is continuing to support those living with scleroderma, and they believe that joining a support group can make a huge difference for patients. “I am constantly shocked by the amount of resources and support the National Scleroderma Foundation offers. For anyone who is on the fence about joining a support group, you should know that all of the facilitators at NSF are well-trained, genuinely caring, and incredibly rich resources when it comes to navigating Scleroderma and its myriad challenges.”
If you are considering joining a support group meeting, the LGBTQ+ group meets virtually on the 4th Wednesday of each month at 7:00 p.m. ET. You can also find the full calendar of meetings here.