If your first session at NHF’s 68th Annual Meeting was the VWD Precon July 21, you got a healthy dose of inspiration, motivation, attention and communication. Leadership coach Jenné Fromm kicked off the 4-hour “deep dive” by using her own life as an example of what was, what is and what could be. After recovering from cancer she vowed to pursue things that scared her—from running marathons and completing two Ironman competitions to running with the bulls in Spain.
Fromm shared four truths common to all people:
Everyone wants to live an authentic, meaningful life.
Life seems to conspire against us and traps us in patterns of mediocrity.
As a consequence, we end up giving our most, not our best.
That blows.
TURNING DREAMS INTO REALITY
At each table, colored index cards turned dreams into goals. “You’re more likely to achieve a goal if you write it down,” said Fromm. The three steps entailed: using positive language, making steps specific and measurable, and jotting down a deadline. A handful of brave souls in the room shared their dreams and how they planned to implement them. “We are meant to do things that we dream about—that we are uniquely positioned for and uniquely equipped to do,” Fromm concluded. And no bleeding disorder need stop you from achieving those.
VOICING QUESTIONS AND CONCERNS
Audience members then had access to two hematologists, Robert Sidonio, MD, and Tunh Thanh Wynn, MD, who answered their questions and addressed their concerns regarding VWD. Here’s a sampling of the Q&A time:
Question from a woman whose teenage son has type 3 VWD and is very athletic: My son has had 0 joint bleeds. When is the ball going to drop? What is his chance of developing joint disease?
Answer: “You should be congratulated for taking such good care of your son’s health,” said Dr. Wynn. He then said that the cumulative effect of joint bleeds over time is what contributes to long-term joint disease. “I have never met anyone with type 3 without some joint damage,” said Dr. Sidonio. It may take 10 years to show up on plain film, but it is occurring, he said. He encouraged the use of routine scans and range of motion assessment by a PT.
Question from a young woman with VWD: I know about full-out bleeds, but what about smaller ones, microbleeds?
Answer: “We have very little information on microbleeds in the VWD population,” Dr. Sidonio answered. The hopeful news is that studies are getting underway and answers will be forthcoming once enough data are gathered. “We need to do range of motion studies over time and MRIs,” he said.
Question from a woman whose daughter’s VWD is not well managed on current treatments: Dr. Sidonio mentioned that ATHN is trying to develop a national VWD project, with free or low-cost genetic testing. Information gleaned from that study could potentially answer questions about bleeding patterns, which treatments might be effective in specific patients, and the interplay of FVIII and VWF.
Dr. Wynn addressed the issue of communication between patients’ treatment center, which could be miles away, and their regular provider. “We try to partner with the local provider, sharing additional expertise that leads to better care.”
Staff from NHF’s education team then shared information on new and improved resources created for the VWD community. The remainder of the session allowed participants to weigh in on what’s working and what’s needed from the patient perspective.
Note: This article was originally published in the NHF Daily and written by Sarah M. Aldridge, Manager of Editorial Services.
