Kendall is a caregiver, a patient, and a nurse in the hemophilia community.
Kendall’s story
Kendall has a son who was diagnosed with moderate factor IX deficiency. She herself recognized bleeding issues after a ruptured ovarian cyst. After her son was diagnosed with hemophilia B, Kendall was diagnosed with mild factor IX deficiency at the age of 24.
I think the biggest thing I try to help people with is that there’re
a lot of emotions that go along with any chronic condition,
especially when it’s your children.
Her diagnosis motivated her to want to help others living with bleeding disorders. “I kind of thought, I never wanted anyone to be alone with this,” she says. That desire to help others resulted in her going back to school, as a single mother, to become a registered nurse.
Because she experiences chronic illness both as a caregiver and as a patient, in her work, Kendall tries to help others with the challenges of a new diagnosis. “I think the biggest thing I try to help people with is that there’re a lot of emotions that go along with any chronic condition, especially when it’s your children,” she says. There’s a transition period after receiving a diagnosis that Kendall describes as analogous to the stages of grief. “There’s shock and denial and so you kind of help people transition through that.”
After her father’s death, Kendall decided to have her DNA tested, and that has opened up a door to her finding many more family members, including some who are living with bleeding disorders. She contacted many of them in order to maintain a connection. “We’re all strangers,” she says, “but we all have this kinship, you know, because of our blood disorder.” Kendall is currently working to set up an educational seminar where she can meet with her extended family members as well as talk with them about bleeding disorders. “I just want to get them in a room and tell them my experiences.”
Kendall’s involvement in the community goes beyond professional and family concerns; she also works as an online advocate and runs a Facebook group for people with bleeding disorders. She acknowledges that most of her day is spent thinking about bleeding disorders and there’s not much separation between who she is and what she does. While it’s nice to have a break from her professional and advocacy work from time to time, Kendall’s family history is what keeps her engaged and working to assist those who contact her for support and information. “I’m fulfilled by helping them. I mean, I’m just lucky that I get to do that,” she says. “My reward is helping people. There’s no way I would let somebody else be alone or feel alone with it.”
My reward is helping people. There’s no way I would let
somebody else be alone or feel alone with it.
There’s a particular focus for Kendall when it comes to women and young mothers in the bleeding disorders community. Her unique perspective as a parent of a child with a bleeding disorder, a woman living with a bleeding disorder, and an RN are often brought to bear as she mentors other moms. Kendall is aware of how quickly emergencies can happen and how important it is to recognize when it’s necessary to advocate for a child with a bleeding disorder in order to receive appropriate care. She is also able to help women living with bleeding disorders by relating her own experiences online in her Facebook group.
As a patient who is also a health care professional, Kendall feels a responsibility to share her knowledge and her access to information with the community. For her, attending hemophilia conferences and events is a chance to share education and resources with others. “There’s no reason they shouldn’t have equal access. When you do this, it’s open, so everybody learns,” she says. “Sharing that education is what kind of made this all okay.”
