Philadelphia, PA
Finding Meaning in Meeting ITP Patients and Families
- What’s your name?
Leigh Anne - Where are you from?
Suburbs of Philadelphia, Pennsylvania but Pittsburgher since 2001. Go Black & Gold! - How are your connected to ITP?
Diagnosed November of 2017 and recipient of multiple blasts of prednisone, dexamethasone, IVIG, Rituximab, Promacta, Nplate, Doptelet, and Tavalisse - How/Why did you get involved with PDSA? Why do you choose to stay involved?
I first learned about PDSA in 2020, three years after my ITP diagnosis, while searching for experts in my state. I came across the expert search tool and connected with physicians in both Pittsburgh and Philadelphia.
My involvement with PDSA began through their ITP Natural History Study. As a former clinical trial coordinator nurse, I wanted to contribute to research with my own experience. During the lockdown phase of COVID, I deepened my understanding of ITP through PDSA’s free webinars on treatment options and vaccination recommendations.
I made my first referral to PDSA when I learned that my son’s 2nd-grade teacher’s daughter had been diagnosed with short-lived, self-limited ITP. This experience made me realize just how isolating this rare condition can be. Wanting to find local support in Pittsburgh, I reached out to PDSA and was introduced to Jody Shy, who guided me into the role of ITP Support Group Facilitator. Since then, I’ve had the privilege of connecting with incredible patients, parents, and families across Pennsylvania through virtual support meetings.
I remain involved with PDSA because, even as a nurse, ITP wasn’t something I learned about in nursing school. My passion for technology, commitment to research, and love for the ITP community drive me to advocate for patients locally, statewide, and even on Capitol Hill through PDSA’s advocacy initiatives. - What is your favorite part about volunteering for PDSA and spreading ITP Awareness?
Meeting ITP patients and their families has been incredibly meaningful. While each person’s journey is unique, there’s a shared thread of experience that connects us all. Through these interactions, I’ve not only found a sense of community but also gained confidence in public speaking—especially when sharing about something that has had such a profound impact on my life. - How has PDSA impacted your healthy journey?
I was an average 30-something when I was first diagnosed with ITP. At the time, my son was about two years old. Had it not been for my diagnosis, I likely would have had another child. While many patients have successfully carried pregnancies and had healthy children, I wasn’t in a stable enough place to make that decision for many years. Additionally, the medications I currently take are not safe for pregnancy.
Beyond family planning, I’ve had to carefully coordinate major dental work, surgeries, and colonoscopies around the fluctuations in my platelet levels. Managing my condition also means working closely with my incredible hematology nurse, medication support staff, and prescription insurance company—often overturning denials and navigating financial assistance programs to ensure access to necessary treatments. - What do you do for school/work?
I have a background as a cardiac nurse, with experience in hospital floor care, clinical trial coordination, and staff education. Currently, I work for a local university’s nursing school, where I coordinate clinical placements for nurse practitioner students across the United States. I love combining my passion for technology, fascination with maps, and nursing experience to support the next generation of healthcare providers. - Share something unique about you and/or one of your favorite hobbies.
I love to garden. Having my bare feet in the garden has been a key part of my healing process. I grow my own tomatoes and peppers from seeds and love to cook from scratch with the fruits of my labor. - What can you be found doing on the weekends?
Being a proud soccer mom screaming from the sidelines and avid flea market hunter of glass and more maps. - What is one thing you’d share with a newly diagnosed patient?
I always end our Pennsylvania ZOOMs by saying that I never want to welcome anyone into our “club” but if you have to be in any club, you’re in a great one. You’re never alone when you have ITP.