To meet Jeff Zuttah is to witness an imposing 6’4” powerhouse, both on and off the playing field. As an All-American offensive lineman at Stanford University, part of Zuttah’s job was to open the pathway for a ball carrier. But after an intense sickle cell crisis landed him in the hospital again, Jeff ended his college football career and began opening pathways for different types of champions.
Sickle cell disease (SCD) is a lifelong genetic condition that causes red blood cells to lose their normal shape and affects their ability to deliver oxygen to the body. When these abnormal red blood cells get lodged in blood vessels, it’s painful, and it makes it difficult to engage in normal activities. Despite affecting approximately 100,000 Americans each year, treatment options are limited for care.
Today, armed with a degree from Stanford and a MBA from Harvard University, Jeff has partnered with Global Blood Therapeutics, Inc. (GBT), a biopharmaceutical company that is developing an initial product candidate for the treatment of SCD, to share his story and build awareness of a disease that affects one out of every 365 African-American births, and one out of every 16,300 Hispanic-American babies born each year. “My goal as a SCD ambassador is to help raise awareness about the disease and inspire others to take an active role in managing their health.” He believes that if people see what is possible, they can inquire about what they want or desire out of life.
Zuttah recognizes that many people are currently living with a chronic long-term illness and losing hope. That’s why he is dedicated to raising awareness and helping others, particularly those who are suffering from debilitating SCD. Here are seven ways Jeff has found strength to help manage his condition:
1. Start early.
Everyone will be different in their process of finding ways to live with chronic illness and disease. “The sooner we seek to understand what we’re managing both physically and emotionally, and how we can incorporate that knowledge into our daily lives – the sooner we’re able to identify what “living our best lives” means for ourselves and define a path forward,” said Zuttah. “Working with GBT has been a great opportunity because it was hard for me to remember anyone who was thriving with sickle cell disease.” Putting a name and face to this chronic disease makes it personal, and it starts a conversation about the need for more research and improved care.
2. Learn the language.
Educate yourself on definitions so you can research, investigate and explore. Become your own personal advocate. “Research suggests that the people who do best are those who have the opportunities to take an active role in managing their own long-term condition in partnership with their doctors,” says Colin Tidy, MD. “Knowing what treatment options are available will give you the confidence to understand when to manage your own condition, self-care, and when to ask for help,” said Tidy.
3. Stay on top of the research.
It’s important to monitor behavior and understand what drives what. A great way to stay in touch with innovative research is to participate in clinical trials. But first, it is necessary to educate patients about what to expect if they enroll in a clinical trial, the safety of clinical trials and their rights as participants. “One big thing that drove me to be involved in patient advocacy is the people I have met. The folks around me have been remarkable,” said Zuttah. “I also understand I’m privileged to have access to experts and resources that enable me to feel well enough so I can better manage and mitigate a number of issues related to my condition.”
4. Empower yourself through self-care.
Over time, you will develop a mindset about how you can continue to learn and grow. “I had no idea I would do the things I’ve done,” said Zuttah. “But one of the most important things I did do was not limit myself.” As you pay more attention to your body and what it needs, you’ll start to see patterns that can help you manage and even treat the symptoms of your condition. At the same time, don’t place restrictions on your health because of fear.
5. Communicate.
Welcome dialogue with the health and medical team. “Managing your own condition is easier when you are involved in decisions about your treatment from the start,” said Tidy. “You may have to remind health professionals that you have this right, and that it is Department of Health policy.” He added that your GP, hospital specialists, voluntary organizations, the internet and the library may all be useful sources of information.
6. Shore up your base.
Research best practices, then follow those guidelines. For instance, the American Heart Association has a list of things to do that are consistent with the best practices of good health. “To get the real scoop, look for a support group in your area and talk with people who have been through what you are facing,” said experts at Harvard Medical School. Family members and close friends can provide physical and emotional support, too. In addition, it is important to focus on the basic pillars of good physical health: eating right, staying hydrated, engaging in moderate exercise (as appropriate for your condition) and getting plenty of rest.
7. Allow yourself to be seen.
You can’t do anything by yourself. If you don’t let those around you provide support, to see you in good times and bad, and live openly, then it will be hard for you to get the support you need. “When I was a young professional, I didn’t voice what I had and what I needed to do,” said Zuttah. “I did more harm than good that way. I created an unnecessary stressor and source of anxiety. I had a crisis and ended up in the emergency room. And I put myself there by not voicing what I needed to do.”
Although living with sickle cell disease creates constant challenges, Zuttah has grown from the experience. “It has helped me focus on the things that are most important and cut out all of the other things that are just noise. This disease—this label—doesn’t define who we are. And it doesn’t define who we can become.”