Care

 , a work in progress

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You’ve probably heard the expression – "Do the 5!" And you may know that it’s about preventing or reducing complications of hemophilia. But do you know about the important role each of the "5" plays in helping you stay healthy?

What is "Do the 5!"?

"Do the 5!" – the theme of the National Prevention Program (NPP) - is a simple, helpful way to remember some of the most important things you can do to take care of yourself.

"Do the 5!" is a collaborative effort by the National Hemophilia Foundation (NHF), the Centers for Disease Control and Prevention (CDC), Hemophilia Treatment Centers (HTCs) and members of the bleeding disorders community.

What are the "5"?


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    Get an annual comprehensive checkup at an HTC
    At an HTC, you will have access to a team of healthcare professionals specializing in hemophilia, including hematologists, orthopedists, nurses, social workers, and physical therapists, all working together to help you live well with hemophilia.
     
    Get vaccinated - Hepatitis A and B are preventable
    Hepatitis A and B are viral infections of the liver which can have serious complications for patients with hemophilia. Fortunately, hepatitis A and B can be prevented through vaccination. The CDC and the Medical and Scientific Advisory Council (MASAC) of NHF recommend vaccination for hepatitis A for all children with hemophilia 2 years of age and older, and vaccination for hepatitis B for any patient with hemophilia.
     
    Treat bleeds early and adequately
    There are several ways to be prepared for treating bleeds. First, learn to recognize the early signs of a bleed, and learn to recognize which bleeds may be serious (see Bleeds). Second, be prepared by having factor readily available at all times. Whether you infuse it yourself or take it with you to the Emergency Room, you can save valuable time.
     
    Exercise and maintain a healthy weight to protect your joints
    Exercise strengthens bones and muscles, and strong muscles protect joints. Talk to your physician or HTC about the type of exercise program which would be right for you or your child. And be sure to follow these nutrition guidelines to maintain a healthy weight.
     
    Get tested regularly for blood-borne infections
    While blood products are safer than ever, it’s still important to be tested regularly for blood-borne infections. Regular testing not only protects you but also could help the medical community identify and address any issues that may occur. Free testing is now available through the CDC’s Universal Data Collection (UDC) program, offered through your HTC.

 

 

Help with Making It Happen

As you read about "Do the 5!" you probably noticed references to two resources – Hemophilia Treatment Centers and the Universal Data Collection program. Both of these resources can make doing the "5" easier.

  • Hemophilia Treatment Centers (HTC) – For over 25 years, HTCs have been helping patients and families with every aspect of living with hemophilia. HTCs are staffed by physicians, nurses, and other healthcare professionals who specialize in helping hemophilia patients and families. Learn more about HTCs or locate the HTC nearest you.
     
  • Universal Data Collection (UDC) – UDC is a voluntary program conducted by HTCs that improve the health of people with bleeding disorders by monitoring and developing prevention strategies for two major health complications of bleeding disorders - bloodborne diseases and joint disease.

    During annual visits to your HTC, you will be asked to provide a blood sample, have joint measurements taken, and provide basic information about your health. The sample and information will be sent to CDC without your name or other identifying information. Through your HTC, you will receive results of tests conducted on the blood sample. To learn more about UDC, visit the CDC website or talk to your HTC.

 

 

Only you can "Do the 5!" for yourself or your child. Tapping into the many available medical, educational, and support resources can help you get started. Doing the "5" takes some work, but there are great benefits for you, your family and the entire hemophilia community.

To learn more about the NHF National Prevention Program, visit the NHF website at http://www.hemophilia.org.

 

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Questions to ask, when selecting a Home Care Provider

 

  •  Is your company a preferred provider for my insurance company?
  •  How much will my insurance cover?
  •  How do I handle co-pays and deductibles?
  •  Do you have a reimbursement specialist to assist with insurance problems?
  •  Do you carry all brands of products?
  •  How much will I pay for my product? (Compare prices to other providers.)
  •  Is there a podiatric/adult nurse available 24 hours a day?
  •  What type of experience do your nurses have with hemophilia, von Willebrand's disease/other bleeding disorders?
  •  Do you supply ancillary supplies such as sharps containers, needles, syringes, and other related infusion supplies, and what is the cost? 
  •  Do you supply oral medications?
  •  How are products delivered to my house?
  •  How late can I order a product and have it delivered the next day?
  •  What is the turn around time after I place an order?
  •  What are your hours of service?
  •  Is there a pharmacist available 24 hours a day?
  •  How do you dispose of sharps containers?

 

 

 


At Paragon Hemophilia Solutions we are focused on expanding excellence in healthcare by providing superior levels of service,
clinical expertise, and patient care. We customize each service we provide to the specific and individual needs of each patient.