One thing that frustrates many of those living with a primary immunodeficiency disease (PI) are the years of struggling it takes to finally reach a diagnosis. After 15 doctors and 5 years, Kelly Spinelli-Deaves was finally able to put a name to her suffering: Common Variable Immune Deficiency (CVID), a type of PI.
Pictured: Kelly Spinelli-Deaves
After receiving her diagnosis, Kelly began searching for information on her rare disease, and thankfully found the Immune Deficiency Foundation (IDF). She felt an immediate sense of relief once she realized there were others who were experiencing a journey similar to her own.
But the years of feeling isolated is why Kelly is motivated to give back to the PI community. Since 2015, she has been volunteering as an IDF Get Connected Leader to make sure others have the support that they need. IDF Get Connected Leaders organize and lead IDF Get Connected Groups, which are local gatherings of individuals living with PI and their family members. These gatherings are where they can share experiences, receive information and gain support. “I want those going through this experience to know they are not alone,” Kelly explains. “There is a cure for that isolation—a community of people who have been there and understand what you are going through.”
Initially, Kelly attended an IDF Get Connected Group in her area, but when the group’s leader could no longer continue, she knew that she had to step up to the plate. Kelly exemplifies what it means to be a volunteer. We are fortunate to have such versatile and dependable volunteers like Kelly leading our groups.
From the very first volunteer orientation, Kelly felt welcome and at home with both IDF staff and the PI community. Her advice for anyone who is considering to become an IDF Get Connected Leader is to take it slow. Building a new group takes time and perseverance. “But whether it’s one person or 20, it is a great reward to know you are empowering people and helping them along with their life-affirming journey,” Kelly says.
These days, the Bonita Springs, FL group that Kelly leads meets monthly and has grown in attendance over the last four years. Kelly feels she is able to pay it forward by having this opportunity to offer support to others. “The most important thing I take away from each gathering is the value of a shared emotional experience,” she reveals. “There is nothing more profound than forming relationships with others who have the strength to reveal their fears, sadness and hopes.” She continues, “I leave each gathering feeling linked to something much larger than myself.”
Yes, knowledge is power and hope. By empowering others with this critical information, Kelly and other IDF Get Connected Leaders are saving lives. “You don’t have to go it alone. In fact,” she adds, “we can’t do it alone.”
There are currently 22 IDF Get Connected Groups in 11 states. To learn more about IDF Get Connected Groups, click here.