Ultra-rares and Reproductive Health: Creating Space for Conversations
By Fiona Soltes
Reproductive health—whether preparing for pregnancy and birth or navigating partner relationship issues—can be challenging for anyone with a bleeding disorder. All the more so for someone with an ultra-rare disorder.
Ultra-rares: Reproductive Health: The Provider Lens offers consumers the opportunity to have honest and unguarded conversations that they might be hard-pressed to find anywhere else. The Friday afternoon session involves a panel of providers—a hematologist, genetic counselor and social worker among them—with insight as well as a willingness to listen.
The open discussion will include background on each of the panelists’ roles in reproductive health, and their experiences in working with people who have ultra-rare bleeding disorders. But there’s also likely to be conversation around the current political climate, and how women, girls and those with the potential to menstruate can advocate for themselves. Consumers will have the chance to share what’s important to them, ask questions and voice needs to be addressed.
“I expect it to be a lively discussion,” said Michelle Witkop, DNP, FNP-BC, NHF vice president, research strategy. “This is an area of need from the perspective of education, policy and research.”
In addition to Witkop, the session will feature Paulette Bryant, MD, physician lead of the pediatric hematology division, St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital; Kathaleen M. Schnur, LSW, Hemophilia Center of Western Pennsylvania; and Tahnee Causey, MS, CGC, program director, Virginia Commonwealth University Master of Science in Genetic Counseling.
“From what we’re hearing, there’s a fear out there,” Witkop said. “A fear of a lack of privacy. On one hand, you need to share your information, but on the other hand, there’s a fear of sharing your information. What can we do to help that? The message that we want to get out is that we, as NHF, want to respect patient individuality and the ability to make those decisions with your provider. Shared-decision making is important. What the decisions are, that’s not our business. Our business is that you have access to care, and the ability to have those conversations and be treated in a manner that you feel is right for you and your life.”
Those with ultra-rare bleeding disorders can experience a lack of resources and support, Witkop said. “A session like this gives them the opportunity to see that there are other people like them, others who have similar issues, and know that they’re not alone.”
Consumers can find additional sessions for ultra-rares by filtering the Ultra Rare Bleeding Disorders track in the interactive program.
Friday, 2:45 PM - 3:45 PM
Consumer – Ultra Rare Bleeding Disorders
GRBCC: 361 CF (In-person only)