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Hemophilia Quality of Life Program

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All of us at Paragon Healthcare, Inc. are so excited to announce that our Hemophilia Division will soon be launching a new initiative called the “Quality of Life Program” spearheaded by our very own Kevin Harris. This program is unlike anything else because it focuses on each hemophilia patient as an individual by evaluating where their quality of life is at and what we can do to improve it.

In the past, health was a very broadly used term – but was measured in ways that only focused on death versus life. The world has come to understand though, that health encompasses much more than just whether or not a person is alive. This is where the idea of “quality of life” comes into play. The CDC defines an individual’s health-related quality of life as something that includes physical and mental health perceptions (e.g., energy level, mood) and their correlates—including health risks and conditions, functional status, social support, and socioeconomic status. This blood disorder can be taxing on a person physically, mentally, and emotionally – all of these things impact a person’s overall quality of life.

For bleeding disorder patients, suffering from a bleed means life changes fast. Bleeds could result in missed days at work, returning home early from a vacation, extra time spent in an infusion center, missed events or activities, and so much more. Missed days at work may put one at risk for losing a job, which could, in turn, out them at risk for losing health insurance. It could contribute to feeling like they’ve let down friends or family, and all of these things can negatively impact a person’s quality of life.

People are unique – each individual has internal goals, dreams, and things that they want to accomplish. A bleeding disorder like hemophilia is an obstacle that can feel like it blocks people from being able to achieve the things that they desire. Our goal is to empower our patients to overcome these hurdles and continue doing the things they love, rather than forever living in the mindset of “I can’t do XYZ.”

If you’re not sure where your own personal quality of life is at – ask yourself the following questions:

  • Do you feel like you’re living your life to the fullest?
  • If not, why?
  • Do you feel like there are things in your life that you’re missing out on?
  • If so, what are these things?
  • Do you have any dreams, goals, or things you want to do in life?
  • Do you feel like anything is hindering you from accomplishing these?
  • If so, how could this obstacle be overcome?
  • What is a daily goal that you could set for yourself?
  • What is a weekly goal that you could set for yourself?
  • What is a monthly goal that you could set for yourself?
  • What is a quarterly goal that you could set for yourself?
  • What is a yearly goal that you could set for yourself?

Each hemophiliac is at a different place on their journey, has different limitations, and of course varying goals. For one person, just being able to take their kids to the park might be huge for them, while another person may be dreaming of climbing a mountain. Goalsetting starts with small, daily, achievable goals that can grow into bigger accomplishments with work and time. This is true for anybody, but especially for our hemophilia patients. We stand behind our patients and are here to help them climb whatever their “mountain” is, whether it’s literal or figurative.

Many people miss out on dreams or goals they’ve set, and we are here to make sure that doesn’t happen anymore. We want to be the support our patients need to not just survive but thrive. We will ask our patients questions like, “Do you feel like anything is hindering you?” If the answer is yes, then it becomes our job to help that person get past that hinderance. If we ask, “Are you living your life to the fullest?” And they say no, then we’ll go to the drawing board to help the person figure out why so that in the future the answer will be “Yes!”

Learn more about the Hemophilia Division at Paragon Healthcare, Inc. on our website at www.paragonhealthcare.com/hemo

 

Additional resources:

https://www.cdc.gov/ncbddd/hemophilia/facts.html

https://www.hemophilia.org/Community-Resources

 

The Paragon Healthcare, Inc. blog provides general information and discussions about health and related subjects. The information and other content provided in this blog, or in any linked materials, are not intended and should not be construed as medical advice, nor is the information a substitute for professional medical expertise or treatment. If you or someone you know has a medical concern, you should consult with your health care provider or seek professional medical treatment. Never disregard professional medical advice or delay in seeking professional treatment because of something that you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately. The opinions and views expressed on this blog and website have no relation to those of any academic, hospital, health practice, or other institution.
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