HemeWork was developed with input from the Hemophilia Federation of America (HFA) and bleeding disorder advocates across the U.S. to help members of the bleeding disorder community work toward long-term personal and professional goals.
The program connects people to a number of resources from the HFA and Chronically Capable, an employment platform that connects job seekers with companies with a focus on remote work opportunities. Resources include tools for career planning, financial management, employment rights, and college planning.
“As new therapies make it possible for more people in the community to enter and remain in the workforce, we also want to meet the need for professional development resources,” the HFA states on its “Helping Forward” resource, which covers career planning and finances.
Although the development of HemeWork began before the COVID-19 pandemic, its launch comes at a time when the world is adapting to new work environments.
In a mini-documentary series featured on the website, Myles Ganley, a bleeding disorder advocate with hemophilia, talks about the challenges of getting employers to understand the ways in which a bleeding disorder can be challenging.
While working as a store manager for a wireless company, Ganley experienced an iliopsoas bleed that kept him in the hospital for 11 days.
“They didn’t understand why, all of a sudden, now I need so much time off of work,” he said.
The series features the stories of hemophilia patients and caregivers, organized around the themes of “adapting,” “struggling,” “recovering,” “thriving,” and “identifying.”
In another video, Michael Hargett, a professional chef with hemophilia, speaks of the need for finding ways to adapt to challenging workplaces while in pursuit of a professional passion.
“I started to see a counsellor because I want the tools to know that just because I have a bleed in a kitchen [it] doesn’t make me less desirable. I can still do the things I want in a kitchen, I just have to alter the way I do them,” Hargett said.
Other tools available to people living with bleeding disorders are discussed through the stories, such as workplace rights.
“One of the things to talk through with your employer is [potential] impact to attendance,” said John Faria, a software engineer with hemophilia. “Because of the federal guidelines for that, you can ask for accommodations on attendance. You can ask for accommodations to make up time.”
Added Hargett: “Finding a purpose is really complex. I’m trying to find a different way to do what I love to do … I’m trying to put together a non-profit to cook for people with disabilities and empower them in the kitchen and teach them a life skill.”