Rare Disease Inspires Calais Native

The staff of Bangor Savings Bank celebrated Rare Disease Day to raise awareness of rare diseases on February 28th. From left to right: Tara Mills, Ann Fiander, Danielle Faulkner, and Diane Hunnewell. (Photo by Lura Jackson)

By Lura Jackson

 

There is a particular kind of strength that can emerge from being challenged, a resilience that serves as both an inspiration and a guide to those around us. For Calais native Bridget Hunnewell, who was born with afibrinogenemia almost exactly 23 years ago, it was her physical condition that presented her with the opportunity to become psychologically stronger. Bridget’s story was among those celebrated recently as part of national Rare Disease Day on February 28th. 

Rare Disease Day has been held on the last day of February since 2008 to raise awareness of rare diseases, which have a 1 in 20 chance of affecting any individual. Bridget’s mother, Diane, began recognizing the day locally while working at Calais Federal Bank. Since Bridget’s birth, the family had been taking trips to Bangor twice a week to receive transfusions of the clotting agent required to cause wounds to close, something that Bridget needed to survive. “People don’t know what people around here are going through sometimes,” Diane explained. “That’s why it’s important to raise awareness.” During Calais Federal’s Rare Disease recognition day, a man from Canada saw the signs and thanked her and the bank profusely for having them up on account of his own family. “It makes a big difference.”

In the case of the Hunnewells, Bridget’s condition gradually stabilized as she grew, and the need for treatments slowly lessened. Thankfully, nurses from Calais Regional Hospital came forward and learned how to administer the treatment, reducing the need for the family to travel. “The nurses were excellent,” Diane recalled.

While Bridget was initially reluctant for anyone to find out about her condition, her friends found out as they grew up together, and by the time she was in high school it was common knowledge. She attended the University of Maine, completing a bachelor’s degree in Abnormal and Social Psychology in 2017. She is now enrolled in a master’s program for Clinical Social Work through Walden University.

Rather than simply enduring afibrinogenemia while pursuing her life goals, Bridget has soundly decided to encompass the disorder as part of her identity. She recently started an internship with the Hemophilia Alliance of Maine, working as the coordinator for girls and women with bleeding disorders. Later this year, she will be among the presenters at the annual meeting of the National Hemophilia Association.

“Having a bleeding disorder has really influenced me in wanting to help others, especially those within the bleeding disorder community,” Bridget shared, explaining that in her position as coordinator she is mainly working with girls and women that have symptoms but no diagnosis yet. “Helping to identify different symptoms, where they can receive treatment and the resources that are out there to help them along the way so they don’t feel like they are alone through their struggles can really make all the difference in the life of an individual with a bleeding disorder.” Bridget firmly believes that by helping people in these situations, she is enabling them to “live their life to its fullest.”

In reflecting on her own experience, Bridget reveals its impact on her. “My bleeding disorder has been challenging to deal with at times, but overall I feel like I’ve become a stronger person because of it, and I would like to help other people find their strength through their challenges as well.”

 

If you would like to find out more about getting support for rare diseases, visit The National Organization for Rare Diseases at rarediseases.org. 

 

Now serving as a coordinator for women and girls with bleeding disorders at the Hemophilia Alliance of Maine is Calais native Bridget Hunnewell (right). With her is HAM co-founder and Community and Program Manager, Tracey Gideon. (Facebook photo)