Quality of life is a phrase used a lot these days, but what does it really mean? As a provider of specialty therapies used to treat bleeding disorders, we see the challenges our patients face daily. To us, though, you’re not just a number; you are part of our family. One of the easiest things to measure in the spectrum of healthcare related to a bleeding disorder is physical wellness: fewer bleeds, fewer injuries, stronger muscles and joints, and an increase in physical abilities. On the surface, it can be obvious when someone is physically struggling due to a limp or a joint that is wrapped up. It is much more difficult, though, to measure the psychological or emotional components of managing a chronic condition. Some of the most significant leaps we’ve seen patients make regarding their quality of life were achieved by changing how they view things, not necessarily changing the outcomes. Although there is not currently a cure for hemophilia or von Willebrand Disease, both can be appropriately managed and allow you to lead a fulfilled life. We are here to support you right where you’re at so that you can overcome the hurdles related to your health, comfort, and happiness.

What is Quality of Life?

"Quality of Life" is defined as the standard of health, comfort, and happiness experienced by an individual or group. The CDC states, “Health is more than the absence of disease; it is a resource that allows people to realize their aspirations, satisfy their needs, and to cope with the environment to live a long, productive, and fruitful life.”

Quality of life asks questions like, “Do you perceive that your life is going well?” This question must consider your joy and grief, housing, employment, relationships, and overall sense of well-being. These factors are not easy to measure since well-being is a subjective concept, but these areas are critical to painting a picture of your quality of life related to your bleeding disorder.

What types of challenges do members of the bleeding disorder community often face?

No two patients are the same, and neither is their experience with a bleeding disorder. A 65-year-old man encounters completely different challenges than a 35-year-old woman or a young child with a bleeding disorder, so why give them all the same advice? We want to reach the hearts of as many people in this community as possible, including teens, children, women, parents, young adults, and spouses. We want to empower women in this community, help teens transition to adulthood, instill confidence in new parents, and remind everyone of the importance of health and wellness when dealing with a chronic condition.

Many individuals with a bleeding disorder have reported the following:

• Feeling pain or discomfort from symptoms during a bleed. It’s no surprise that one of the main goals for anyone with a bleeding disorder is to have fewer bleeding episodes or none at all. What happens, though, when a bleed DOES occur? Bleeds can make things that are typically simple day-to-day tasks excruciating and challenging. When a patient comes on service with Paragon to treat their bleeding disorder, we partner with them and their doctor to understand what they’re going through. We serve patients right where they’re at on their journey.
• Feeling like they cannot do things they love. Does having a bleed create a feeling that you’re separated from doing the things you love, or could it create an opportunity to shift your focus and time onto trying new things? Sometimes obstacles make things hard, but you are not alone. We partner with our patients to look for areas of opportunity and growth. Our Quality-of-Life Program isn’t intended to correct anyone’s lifestyle or tell them how to live but rather provide empowering information to create opportunities to view things a little differently. We want to inspire community members to work towards their goals by making small, positive changes to their lives.
• Feelings of isolation or frustration. It’s easy to feel alone or frustrated when dealing with a chronic health condition – but our team here at Paragon is ready to support you every step of the way. We are here to help provide you with clinical resources, education, and more so that you can successfully manage your bleeding disorder.
• Feeling discouraged through the process of finding a therapy that works. Learning what works best for a patient takes time. This can be challenging, especially when it would be ideal to have immediate results when trying a new therapy. Our team will work with each patient and their physician to navigate finding the best regimen for the individual.
• Difficulty finding resources. It can sometimes be tough to find help, especially when it feels like there’s no gas left in the tank. There is so much information out there, so many tools to be used scattered throughout online resources, events, presentations, programs, and treatment centers. Data can be overwhelming without the right voice, and it can be challenging to gather up the right information that pertains to you from so many different places. Work, school, family, and everything else included in a typical day can push finding and utilizing resources down the priority list – but we’re here to help.

There is hope. What is Paragon doing to promote Quality of Life within the bleeding disorder community? We’ve taken a step back to listen to people just like you. We’ve been on a mission to identify every group of individuals affected by bleeding disorders and the obstacles each group may be facing. Bleeding disorders add different challenges to the lives of those involved, and we feel like a blanket approach just won’t cut it.

There is no magic recipe for a high quality of life, but there are some tips and tricks everyone could benefit from while on the journey. This program gives us a chance to continuously learn from the community and collectively develop resources tailored to each individual. We want this program to create meaningful relationships with bleeding disorder community members to help connect the dots and lead those in need to the right places. Through Paragon, patients have access to our social workers, dietitians, nurses, health and life coaches, and more. Together with our team, your physician, caregivers, and family, we believe you can live your life to its fullest.

What other resources are available to the bleeding disorder community?

• Hope for Hemophilia – “A 501(c)(3) non-profit organization established to be a giver of hope, strength, and resources. They have been helping people living with hemophilia and their families through seasons of crisis since 2009 with financial, emotional, and practical support.”
• Hemophilia Federation of America – “A patient education, services, and advocacy organization serving the rare bleeding disorders community. They focus on the bleeding disorders patient and caregiver community. The vision of the Hemophilia Federation of America is to improve the care and quality of life for all people with bleeding disorders by removing barriers to diagnosis, treatment, and cure.”
• National Hemophilia Foundation – “Dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy, and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations, and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).”

As the healthcare industry shifts to focusing on hemophilia and von Willebrand Disease patients’ experience, physicians and providers alike are recognizing that happy and healthy patients are the sum total of a positive physical, mental, and emotional state. Quality of life is a term used to encompass more than just a patient’s physical symptoms from their health condition. Our goal is to empower you to take charge of your health by learning practical ways to manage your bleeding disorder.

For more information about Paragon Healthcare, visit https://paragonhealthcare.com/.