Get Connected Groups expand to meet PI community needs

When Ariana Salaza learned her daughter Juliana had congenital athymia, she launched an internet search, even though doctors cautioned against it. A journalist by trade, Salazar believed that no matter what she found, having information would allow her to make the best decisions for her daughter.

Congenital athymia is a condition where a baby is born without a thymus, the organ necessary to produce working T cells for the immune system. The diagnosis meant Juliana was vulnerable to life-threatening infections.

Doctors told Salazar that without thymic tissue implantation surgery, the only treatment for congenital athymia, her daughter wouldn’t live past age 2, and could die much sooner. At the same time, they said it could take up to two years before she underwent treatment.

The math didn’t add up, said Salazar. If her daughter wouldn’t live past 2 why take two years to get her the treatment? When she pushed the doctors for answers, they finally told her that there were others on the waiting list and that whether her daughter lived long enough for her turn for treatment was dependent on Salazar’s ability to keep her isolated and infection-free.

“At that point, then I really understood just how bad it was, and it was pretty grim,” said Salazar.

To help her navigate the time waiting for treatment, Salazar sought support through a congenital athymia-specific social media group. She met other families who have children with the condition, some of in their teens and years past treatment.

“It was really helpful. Obviously, they bring a different perspective, they're kind of through the worst of it, if you will,” said Salazar.

Inspired by the community she found on social media, Salazar, whose daughter is now a year and a half post-treatment, and Chelsey Nolasco, whose son also received thymic tissue implantation, work together as co-leaders of the Immune Deficiency Foundation (IDF) Get Connected Group (GCG) for caregivers of children with congenital athymia.

GCGs are monthly virtual support meetings that provide a safe space for individuals with PI and their family members, including caregivers, to connect and share lived experiences, exchange information, find resources, and receive support.

All GCGs meet online monthly, and some are tailored to serve people living in specific cities, states, and regions. In addition, some groups are designed for certain segments of the PI community, such as young adults, parents, spouses/partners, and healthcare professionals with PI.

Salazar said that she and Nolasco met through the social media group and wanted to help others in a more real-time fashion online. The GCG was the perfect solution.

“This is a tough diagnosis, but there are other people in it with you. Now that we are three years into it, we can help guide someone with a newly diagnosed baby. Hopefully, they'll get something out of it and not feel so lonely because it gets lonely in isolation and not talking to people,” said Salazar.

The congenital athymia GCG is one of several new virtual support groups added to the existing GCGs based on feedback from the PI community. Other new GCGs focus on mast cell activation syndrome, the Mountain West (Colorado and surrounding states) region, and supporting men with PI.

“The newly launched Get Connected Groups were started after members of the PI community expressed a clear need. Our volunteers then stepped up as leaders to meet that need and continue providing connection to some otherwise isolating and very rare diagnoses,” said Jenna McFadden, IDF program manager of support services.

“Our volunteers devote their time and energy establishing the groups, leading the groups, and ensuring that they run from start to finish each month.”

McFadden said the groups are a lifeline for those who don’t have a support network.

“Those in the PI community must make decisions and sacrifices every day to stay healthy and safe. Our groups provide a place where they can connect with others without compromising their health and where they can join exactly how they are without judgment,” said McFadden.

Chris Simpson, 37, leads the men’s GCG. Doctors diagnosed Simpson with common variable immunodeficiency (CVID) at age 2 but a new group of providers last year discovered he has hyper IgM syndrome, not CVID. Simpson lived with repeated infections for decades, leading to chronic conditions including bronchiectasis and liver damage. He is currently awaiting treatment for his hyper IgM through a gene therapy clinical trial.

At a recent meeting, group members discussed their health, and how they manage their energy levels, said Simpson, who is learning to open up more about his PI.

“It's an invisible illness. No one really, truly knows the struggles unless you're talking to other patients who are very aware of what you have to go through on a day-to-day basis,” said Simpson. “The group was created as a place for men to be vulnerable and express themselves. At the end of the day, if there was a need for the group, and it sounded like there was, I was all for trying to help out.”