The Long Road Back to NEHA
The Long Road Back to NEHA
Written by Heather Hoiseth
Posted: May 14, 2026. This article was originally shared in our Spring 2026 Newsletter.
I can’t remember a time my family wasn’t part of NEHA. My mom would take me to other members’ houses, and moms would sit around the table talking about their personal stories, struggles, and how to continue to advocate and spread the word about NEHA. I remember the Christmas parties, the fun, all the families that attended. Sometimes we had special guests like Major Mudd and Bozo the Clown. Yes, I’m that old!
NEHA meetings were much smaller back then–nothing like today’s conferences. In high school, I began talking on panels about growing up with a bleeding disorder, who to disclose that information to, how to pick college, etc. In college, I continued volunteering with NEHA, and we established a young adult’s group. We planned activities for the 20-somethings who just wanted to connect with others who were around their age. In 1986, Wayne and I got married, and that meant he could now volunteer with me as well! Through all of this, my mom remained very active in NEHA–eventually becoming the executive director, and as you can imagine, she put us to work!
In the late 1980s, things had drastically changed in our community as HIV/AIDS came to the forefront. Wayne and I advocated when we could, and we participated in the AIDS Action Committee Walks in Boston with our homemade signs to show support for everyone affected by HIV. But after a few years, we needed to take a step back; meetings and social events were rather painful as we learned how many of our friends had passed away, many from our young adult group.
In 1993, our son, Erik, was born, and he was diagnosed with VWD shortly after his birth. We slowly returned to NEHA as a family and once again attended the Christmas parties. We wanted our son to see other children living with bleeding disorders. In 2000, I was diagnosed with Hepatitis C and basically withdrew from everything, except caring for Erik and trying my best to cope with a year taking Interferon. It was a difficult time for all of us. Things eventually started to normalize, but I was then diagnosed with thyroid cancer in 2006. From then on, I put much of my effort into healing and advocating for cancer patients. I helped run Relay for Life in my town and had my own walk team.
I still got the NEHA newsletter and kept up with news in the bleeding disorders community, but I wasn’t ready to dive back into anything. Once Erik was in college, I was looking to the future and realizing how much I missed my involvement in NEHA and the bleeding disorders community. I slowly but surely started attending events again–my first event back was a virtual cookie decorating session during the pandemic. I met many new women that instantly became friends. I started a Walk Team, I attended NEHA conferences as well as national ones. I was once again ready to advocate for VWD, women with bleeding disorders, and the whole bleeding disorders community. I became as involved as I could, serving as the Unite Walk Chair one year, joined planning committees for events like the Consumer Medical Symposium, and attended every event I could.
During this time, I began to realize the need to also advocate for myself with my HTC and treatment. I actually learned how to infuse myself at 55! What a game changer this was. This gave me so much independence. I continue to give my input in particular about VWD by being on different planning committees. I think VWD patients are represented more, and our community as a whole has learned so much.
I’ll continue advocating and attending and help plan meetings, and I am hoping someday to come full circle and attend a Christmas party with a grandbaby. I thank NEHA for continuing to make me feel welcome and giving me the tools and a voice in the bleeding disorder community. I hope I can continue for many years to come!
Heather and her husband, Wayne, live in Watertown, MA. Heather has Von Willebrand Disease Type 1, Severe.
Photo: Heather (left) and Nancy Messina (right) making cookies for NEHA’s Red Tie Soiree in 2023.