Long-time IDF volunteer finds love, support within her zebra family

This blog post is part of IDF’s Stories Project, designed to provide a venue for those living with PI to share their experiences. Some are first-person accounts, others are written by IDF staff. If you have a story you’d like to share, email us at stories@primaryimmune.org.

Throughout her childhood, Mandy Davis endured constant illness, always on antibiotics and frequently hospitalized for infections. Finally, at age 23, thanks to the efforts of a tenacious doctor, Mandy learned she had common variable immune deficiency, or CVID. 

Having cleared the hurdle of diagnosis, Mandy faced a new challenge – getting the health insurance company to pay for her immunoglobulin (Ig) infusions. She appealed her case three times (the maximum) and the insurance company still refused to pay for her Ig treatments. She decided to take her case to the New Jersey Department of Health and Human Services.

In the midst of organizing the paperwork, she discovered a form from the insurance company outlining a list of 13 medical tests, the results of which would determine if infusions for Mandy were medically necessary.

Mandy took the list to her doctor, underwent testing, and met the health requirements put forth by the insurance company.

Within 10 days of filing the appeal, the state forced the insurance company to cover Mandy’s infusions.

Impressed by her advocacy efforts, Mandy’s immunologist asked Mandy if she was an attorney. “When I told him I wasn’t he said, ‘Maybe you should be, nobody gets this level of appeal done without an attorney,’” recalled Mandy.

Mandy credits IDF with helping her win her battle. Even back in 2004, IDF’s website provided a valuable link to services and the Patient and Family Handbook acted as a source for Mandy to cite information during her appeals process.

After her victory with the insurance company, Mandy and her family joined IDF and attended events like retreats and conferences. Inspired by IDF’s work, Mandy became a volunteer for the organization. She began as a Peer Support volunteer working one-on-one with patients newly diagnosed with CVID, and helping some of them with their own health insurance struggles.

“What motivated me to get involved was that the beginning of my road was the same as everybody else’s and other people helped me find ways to navigate it. I was now in a position to help other people navigate it,” said Mandy, who has dedicated over 15 years volunteering for IDF.

As IDF expanded its programming, Mandy signed up to assist. She served as a subcommittee chairperson and on the planning committee for the first New York Walk for PI, and presented on panels at Teen Escape events.

Mandy’s career in the education field – she holds two master’s degrees, one in special education and the other in education administration – also paved the way for her role as a presenter on education rights at National Conferences.

“I’ve done a little bit of everything,” said Mandy.

Mandy said among her favorite IDF experiences is participating in Advocacy Day. During her 10-plus years meeting with legislators, Mandy developed a friendship with a woman in her 80s who also has CVID. She called it a “beautiful juxtaposition” to show to lawmakers how PI can affect anyone, at any stage of life.

“The connections you make that you wouldn’t elsewhere become so meaningful,” said Mandy.

Those connections shone through recently when about 20 of Mandy’s friends from the PI community, who live across the globe, surprised her with a remote baby shower. Mandy is due with a baby girl in August. Because of COVID-19, and as a single mother by choice, Mandy has lived completely alone at her home in New Jersey since March.

Mandy's friends organized the shower through social media and sent gifts to the home of Carol Davis, Mandy’s mom. Carol wrapped the gifts and, along with assistance from Mandy’s friend Jessica Brunner, also a zebra, “porch-bombed” Mandy’s house with gifts and decorations. 

Jessica streamed the event live on Facebook, and Mandy has streamed subsequent postings of herself opening the gifts. “Mandy’s Solo Quarantine Baby Shower,” is a reminder of the incredible support system she has in the PI community.

“It was a beautiful ray of sunshine during an otherwise pretty dark and scary time,” said Mandy.

Mandy, who has a number of autoimmune diseases stemming from CVID, has been hospitalized twice during her pregnancy, but her baby remains in excellent health. Mandy maintains her bi-weekly infusions at home with help from her nurse and has even had some reduction of symptoms such as fewer migraines, and less nausea and joint pain. She maintains a positive outlook about her pregnancy and knows that the PI community is there to support her.

“I’ve spoken at many events including Patient Education Meetings, as a panelist at National Conferences, Teen Escape Events, Walk for PI, and so many will have heard me say before that no one expects to or wants to belong to a rare disease group or community. But that over the years, I’ve discovered that I’m blessed because if I had to belong to one, I ended up in the best one there is because it’s truly like a family and the people I’ve connected with over the years have become my zebra family,” said Mandy.

“There’s always been countless examples I could highlight to illustrate the point, but the way my zebra community rallied around this single mama-to-be during a global pandemic – if ever there was one event to truly epitomize the nature of our community, there it was in a nutshell!”