Peer support program builds connection

Mark Lawrence lived with unusual infections for decades. Scarlet fever, measles, mumps, bronchitis, ear infections, thrush, and malnutrition sent Lawrence to the hospital frequently as a child. As an adult, the infections continued but doctors only prescribed antibiotics and refused to run tests.

After a gallbladder removal four years ago, he pushed doctors to look further into his immune system function. Last year, at 69, Lawrence learned he had common variable immune deficiency (CVID).

Lawrence turned to social media for primary immunodeficiency (PI) resources and that’s when he discovered the Immune Deficiency Foundation’s (IDF) peer support program. He signed up to participate and requested a peer support coach. A man with PI a few years younger reached out through email.

“Communicating with him reinforced some things I had read and that I had questions about, like experiences with doctors, and getting doctors to respond to you. I think my greatest difficulty is getting listened to because you've got the doctor and they only have so much time, and that whole zebra thing really holds true. The doctors are trained to look for the obvious and not the unusual, and that’s exactly what happened to me,” said Lawrence.

The peer support program is a free resource that connects individuals with trained volunteers who have personal experience with PI. A confidential program, peer support is available to patients, parents, family members, friends, and caregivers.

“When an individual in our community requests peer support, they are typically at a point where they feel they have nowhere else to turn, and almost all who request peer support are in a place where they have an urgent need for help,” said Jenna McFadden, program manager of support services at IDF.

Those interested in being matched with a peer support coach can contact Ask IDF at [email protected] or call 410-321-6647 and a staff member will arrange for a peer support volunteer to contact you by phone or email based on your needs and preferences.

Last year, IDF strengthened its peer support program by taking steps to better match peer support volunteers with program participants. IDF surveyed peer support coaches about their personal journeys with PI, diagnoses, treatment, co-occurring diagnoses, surgeries, hobbies, families, geographic location, faith, and community identity.

“Given the in-depth information we gathered, we’ve been able to match individuals with those who have very similar lived experiences to them and specific needs,” said McFadden.

“This is so important for our individuals who need support. It helps them not feel so alone and gives them a coach who can truly empathize with them and share valuable information.”

Patients looking for support also take a needs assessment to best match them with their peer coaches. They relay any specific requests, and share their diagnoses, co-diagnoses, hobbies and how they’d like to correspond, whether by email, phone calls, or video conference.

Lawrence said he and his peer support coach got along well and he appreciated that someone also diagnosed with PI guided him in the right direction.

“The more help you get, the better, especially from someone who’s been there before. I think it’s good to get somebody to help you ask the right questions to the doctor and to know it’s not just you who’s experiencing these things,” said Lawrence.

Program participants visit with their peer support coaches for about one hour a week for up to four weeks.

“Then I follow up and provide them with three options: do you want to continue, do you want to close the case, or do you want to be rematched?” explained McFadden. “If they decide to close it, I send a peer support survey to them for feedback.”

As part of improvements to the program, IDF also instituted an orientation for peer support volunteers based on a model from Johns Hopkins Medicine. The one-hour session offers techniques on how to convey empathy, be an active learner, establish boundaries, and be comfortable with the process of acting in a supportive role.

A peer support coach since 2013, Kim DiGangi remembers the emotions she felt when doctors first diagnosed her with CVID in 2004.

“I went through this whole process where I felt completely out of control, disconnected, and I wasn’t able to accept what was happening, let alone understand it. I felt like I was the only one who was dealing with it. It was just a very isolating and lonely and frightening time in my life,” said DiGangi.

DiGangi attended an educational session a couple of years after her diagnosis where she heard others speak about their diagnoses and how they were managing their lives with PI. Becoming a part of a larger community profoundly impacted her PI journey.

“It put me in such a better place. IDF was there for me when I felt in a dark place,” she said.

DiGangi met more people in the PI community at conferences and, after encouragement from a friend, she volunteered to become a peer mentor.

“It’s very fulfilling because I can put myself in their shoes. They’re new to this and feeling completely overwhelmed and I try to help them navigate that a little better and give them the support that I didn’t have. That’s what made me decide to do it,” said DiGangi.

Questions about how to find a doctor or where to find more information about a medical issue come up frequently, said DiGangi. Sometimes people inquire about health insurance coverage and she refers them to the appropriate IDF staff member. One time a mother whose child had just been diagnosed simply needed reassurance.

“We started talking and she was crying and on edge, and I completely get it. I tried to tell her that I was here for her and IDF is here for her. I think that helps because you let the other person talk and you tell them that you are standing with them. You are here and I think that makes all the difference in the world,” said DiGangi.

“At the end of our conversation, she said she had the information she needed to move forward. Then when I checked in with her, she was very gracious and thankful for our conversation. It’s the little things like that. I don’t think it’s a big ‘aha’ moment or anything but it’s just helping people realize they are not alone, that there is somebody here for them.”