By Sandy Smith
Making the transition from young adult to adult is challenging on its own. Then add in a bleeding disorder. But a rare one? Let’s just say there’s a lot more work involved.
The session Practical Tips for Navigating Life: From Young Adult to Adult Years focused on real-life scenarios for those in the rare bleeding disorder community, from what to disclose at work to how to travel.
Troy Longman II, a former member of NHF’s National Youth Leadership Institute, discussed moving away to college and the need to find a new primary care physician. “It’s important to make sure that you have a good primary care physician who understands that you have a bleeding disorder.â€
He talked about trying to be seen for a cold when the physician was alarmed by something else related to his rare bleeding disorder. “I kept telling them, ‘I’m not trying to be seen for that right now. That’s normal for me.’â€
Patrick James Lynch, CEO of Believe Limited, moderated the panel. “Not everyone has heard of the bleeding disorders that we are affected by, not even the ones that are more common to us, like hemophilia and von Willebrand disease.â€
Connie Montgomery, a national patient and family advisor, discussed traveling with a rare bleeding disorder. She first pointed to NHF’s Steps for Living website (https://stepsforliving.hemophilia.org/), which includes “a section on travel that you cannot beat.â€
One tip from Montgomery includes the need to make sure all medications are properly labeled and to “be kind to the TSA agent.â€
She also recommends carrying a signed physician’s statement at all times. "Please, know ahead of time and consider finding one of our 133 HTCs, which are federally funded comprehensive healthcare centers which mainly treat bleeding disorders. Be mindful of where those are located."
Danielle Nance, MD, a hematologist at Banner MD Anderson Cancer Center, suggested the letter include “your diagnosis, your baseline factor level, what bleeding symptoms you typically experience, your basic treatment plan for severe and mild bleeds, and contact information.â€
Young adults are transitioning into the workplace, too. So what should they share with employers about their disorder? “It is a personal decision for each of us as it relates to our bleeding disorder as to what we share,†Montgomery said. “Know whom to share with, how much to share and what reasonable accommodations to request with your employers.â€
Disclosures should be on a “need to know†basis, including a direct supervisor and the Equal Employment Opportunity Commission representative and/or the human resource officer. “No one else needs to know, unless you decide it would be beneficial to your health,†Montgomery said.
That information should be shared at a basic level “using terms that people can understand.â€
The employee handbook should be read and kept, with an emphasis on the employer’s procedures for people with disabilities, its policies related to the Family Medical Leave Act and “what your employer supports and does not,†Montgomery said.
Nance recommends wearing medical alert jewelry rather than relying on a smartphone document or tattoo. “If you’ve been in a car accident and that phone is not on you, there is no way for medical personnel to know that you have a medical condition that needs emergent focus. The problem with bleeding disorders is you don’t have a lot of time.â€
Tattoos aren’t effective, either. “My understanding is that paramedics aren’t going to be looking at your tattoos,†Nance said. “Depending on what happened to you, that could be obscured. The question of medical card in your wallet, this is a great idea. I don’t think it’s going to take the place of a physical piece of jewelry on your body all the time, though.â€
When in an accident, particularly when away from the HTC or hematologist, Nance recommends making a quick call so that they can “call ahead to wherever you are and let that treatment team know what’s going on. â–
