Reverend Freddye James, D.MIN, first became aware of the Immune Deficiency Foundation when she was diagnosed with Common Variable Immunodeficiency (CVID) in late 2018 and early 2019 by Cynthia Lawrence Elliott, M.D. (North Georgia Rheumatology Group, Lawrenceville, GA) and Marissa Shams, M.D. (Emory Healthcare, Allergy & Immunology, Atlanta, Georgia). Freddye’s reaction to receiving her diagnosis was filled with confusion and fear, a common theme for those with a rare diagnosis.
“To say I was shocked and dismayed to receive this diagnosis is an understatement. I’d never heard of these types of diseases. I was seeing an allergist/immunologist and a rheumatologist. They came to the same conclusion at the same time, and I was diagnosed with CVID by them both,” shared Freddye.
Initially, Freddye denied treatment. She was afraid of introducing a human plasma-based substance into her body and was fearful of transmission of diseases.
“My allergist/Immunologist told me the first thing I should do is join IDF. I did and was matched with a peer educator who told me about his experience of being infused with intravenous immunoglobulin (IVIG) for many years. I started with subcutaneous immunoglobulin (SCIG), and the rest is history,” said Freddye.
After being diagnosed and receiving treatment, thanks to IDF’s peer support program, Freddye decided to participate in IDF Walk for PI Atlanta in 2021. She raised more than $1,400 thanks to the help of her family and friends.
Freddye later found out that her sister, whom she had asked to donate during IDF Walk for PI, decided to donate monthly to IDF. Shortly after, Freddye chose to follow her lead and give back. Freddye’s been a proud monthly donor ever since.
“What drives me (and my family) to donate is the personal work that IDF does. I don’t know where I’d be if I had not been able to speak with someone who had CVID and had been taking infusions for some time with few to no ill effects,” said Freddye. “I am grateful for the research, awareness, and education that IDF supports. I am also grateful for the way they touch individual lives with the many programs they have such as peer support. Hearing directly from someone with the same disease and very similar treatment made the difference between me not accepting treatment due to lack of information and being able to make an informed decision to accept treatment.”
Freddye looks forward to being able to gather later this year at IDF’s PI Conference. She’s excited to meet more individuals living with PI and the IDF staff who have helped her throughout her journey.