Tammy Jones learned she had a bleeding disorder when her youngest daughter was diagnosed at age 14. “She started having nosebleeds that just wouldn’t stop,” says Jones, 55, of Greenwood, Arkansas.
Eventually, tests at Arkansas Children’s Hospital revealed her daughter had von Willebrand disease (VWD). Jones and her two older daughters were later tested and received the same diagnosis. Jones’ son was unaffected. But her grandson, 10, is the fifth member of her family with the bleeding disorder.
Now decades after the initial diagnosis, the Jones family has educated doctors and emergency workers in their community. Jones is a passionate advocate for patient and provider education. She often speaks about her family’s health challenges at public events.
Despite her commitment and involvement, Jones had yet to attend the National Hemophilia Foundation’s (NHF’s) Annual Meeting—until 2015, when she was awarded the Anna DeSimone Women’s Travel Grant. “I was so happy for the opportunity to attend the conference,” says Jones. “I was in awe of what I learned there.”
Annual Meeting highlights
At the 67th Annual Meeting in Dallas, Jones was impressed with the women’s topics covered, including a session on intimacy. “It’s such an important conversation to have. I was able to bring back that knowledge to women’s retreats,” she says. Jones is a facilitator and speaker at retreats run by NHF. Networking among the thousands of attendees was another highlight. “For the first time, at the conference, I met a male with VWD.”
Because of her expertise, Jones was invited to speak during a panel discussion of VWD. “It does run in families, and it’s important to trace it back,” she says. “I grew up not knowing that I had it, but I’ve been able to save my girls from a lot of problems I faced.”
Hope for the future
NHF’s Annual Meeting gave Jones hope for the future. Learning about potential new therapies means her grandson will have more medical options. Jones returned to Arkansas energized from the sessions and discussions. “I’ve always been involved, but I’m clamoring to learn even more.”
Jones is serving on the planning committee for NHF’s 68th Annual Meeting in Orlando in July, where she’ll help shape the agenda, which includes a VWD track. Her next goal is to take her husband and the rest of her family to an NHF Annual Meeting.
Although the family has a good handle on treatment, living with the condition and explaining it to others is still a struggle, especially for Jones’ grandson. “We have our good days and bad days,” says Jones, who works two part-time jobs and helps care for other family members. “But there is so much more information available now. All of the outreach, from the national conference to talking to local health providers, does make a difference.”