Shared Genes and Diagnosis

Lompoc Mother-Daughter Duo Advocates for Primary Immunodeficiency Awareness and Treatment

Mother and daughter Annette and Baylee Gregory are both patients and advocates for Primary Immunodeficiency awareness and treatment. | Photo: Courtesy

Treating a rare immune disease is a family affair for one Lompoc duo.

Baylee Gregory spent her childhood in and out of school, with frequent trips to the hospital without a detected cause. At the age of 14, she received her primary immunodeficiency (PI) diagnosis. Annette, her mother, received a PI diagnosis almost eight years later.

PI weakens the immune system and makes those who are diagnosed more susceptible to infections and health problems. There are approximately 500,000 people living with PI in the U.S., with many more remaining undiagnosed, as it can take up to 10 or more years for a diagnosis to be reached in many cases.

“It was almost relieving when I actually got a diagnosis, because I knew there were options for me out there,” said Baylee.

With the introduction of Hizentra, an immunoglobulin therapy, PI patients like Annette and Baylee are able to self-administer the prefilled syringe treatments and focus on everyday living.

For Annette, a flight attendant, Hizentra gave her the flexibility to travel without hindering her job and administer doses on her own schedule.

“I didn’t have to go to an infusion center; I was able to live the life how I wanted to. I finished high school, graduated, and went off to college,” said Baylee. “It has allowed me to go live a life that I choose to live because of it.”

After graduating from the University of Oregon, Baylee returned to the Santa Barbara area, where she got married and enrolled in nursing school at Westmont College.

Baylee’s decision to pursue nursing stems from the gratitude she feels toward those teams of medical responders who treated her and whom she built lasting relationships with.

In deciding to pursue nursing, Baylee thought, “How can I give back to my community that has helped me for the last 26 years?”

In school, Baylee had the unique opportunity to give her classmates a teaching lesson by allowing them to administer her Hizentra. This hands-on experience served as an invaluable exercise for her classmates and an empowering demonstration for herself.

Baylee and Annette are advocates for PI awareness both at home and across the United States through the Immune Deficiency Foundation. The two have attended conferences together, where they have connected with the PI community and raised awareness.

“I want other people to know that it’s okay and you have a support system behind you, no matter where you’re at in life,” Baylee said.

For Annette, both as a caregiver and having the illness herself, being an active voice in the PI community “just warms a mama’s heart” to see her daughter connect with others who have the same struggles.

Baylee is one of six kids but spent considerable time with her mother growing up, fostering an even closer connection upon both receiving their PI diagnosis. Their mother-daughter relationship has also played a large role in motivating Annette to use her voice as an advocate. Annette always wanted her daughter to feel included and have a sense of normalcy in her childhood.

With improving treatments and technology, more people are getting more accurate and timely diagnoses. “I don’t want someone to feel alone like we were,” said Annette.

For more information about primary immunodeficiencies — a group of more than 550 conditions where part of the body’s immune system is missing, does not function correctly or at all — see bit.ly/4km0OMg.