Receiving a primary immunodeficiency (PI) diagnosis sparks a mix of emotions—some may feel relieved to finally get a diagnosis after many years of illness and some may experience uncertainty about what the future will hold and how daily life will change. IDF volunteer and community member Scott Bywater can recall the whirlwind of emotions and decisions following his own Common Variable Immune Deficiency (CVID), a type of PI, diagnosis in 1999. Serendipitously, he stumbled across the Immune Deficiency Foundation (IDF) online soon after.
Pictured: Scott Bywater
The support he received during that time was crucial. “That experience of facing a new reality and its unknown consequences is what motivates me to be there for others,” explains Scott who has been a volunteer with the IDF Peer Support Program as an IDF Peer Support Coach for more than ten years. “Relationships were such an important part of my journey, and I wanted to be there to give hope to others on the same path.”
Established in the mid-90’s, the IDF Peer Support Program connects those who share similar relationships to PI. The program provides the opportunity for those living with PI and their families to interact with one of IDF's Peer Support Coaches.
As an IDF Peer Support Coach, Scott listens to people’s cares and concerns, offering emotional support and sharing his own experiences and insight. “Over the years, I’ve had many opportunities to counsel others with a new PI diagnosis,” says Scott. Those relationships have varied, ranging from a one-time exchange to a great willingness to talk over the course of many years. “But every one of those contacts has been cherished,” adds Scott.
In addition to his peer support work, Scott also volunteers for IDF Plasma Partners Program as an IDF Plasma Awareness Coordinator to help increase the understanding of the relationship between people with PI, plasma donation centers and the plasma donors themselves. “I was a little apprehensive at first,” says Scott. “I wasn’t sure how plasma donors would respond to a stranger invading their space. It didn’t take long for me to recognize that sharing my story and how they are helping others like myself made their time in the plasma centers a bit more rewarding.”
Volunteering has been an important part of Scott’s own healing, and it has introduced him to some amazing and resilient people. “It has been a very personal journey," Scott says reflecting on his time volunteering for IDF. “My hope is that through my volunteering, I help someone feel less alone and give them the tools to help them live a healthier life.”
While volunteering means different things to the individuals who offer their time and energy, it helps create the same results: giving hope to people living with PI and making a positive impact on their lives. You can get involved with IDF in a number of ways—from a one-day commitment to an ongoing role. “If you're new to volunteering, try it out,” Scott suggests. “It feels good to make a difference in our community.”
To learn more about becoming an IDF volunteer, click here.