A guide for living with hemophilia through different life stages.

Aging with hemophilia: 26+ years

Staying (pro)active

Hemophilia is not a condition that stops you from living your life. When there is no viral infection present, a person with hemophilia can have a life expectancy almost equal to that of the general male population. Today more than ever there are treatment options and precautions you can take to help safeguard your body and help prevent future, more serious complications.

It is important to note that while a lot of caregivers and medical staff still focus on bleed prevention, this is the first time in recent history that we see an aging hemophilia population dealing not simply with their primary condition, but the same age-related issues as those without hemophilia. With the help of your HTC staff, remaining active and enjoying life as you age with hemophilia are not wishful thinking—they are realities. Asking for help as you age is crucial to staying healthy and independent.

Coming of age—tips for healthy living
  • Staying fit is one of the best things anyone can do to counteract aging. Regular exercise can promote healthy bones, joints, and muscles, as well as relieve arthritis pain, improve circulation, and reduce anxiety and depression
  • Check with your health care provider before beginning any exercise program. If you are going to start a new exercise regimen, start out slowly. The intensity of your exercise should correspond to the severity of your condition and the condition of your joints
  • Practice good nutrition and healthy diet—it can help to reduce the occurrence of chronic diseases and improve health
  • Know your disease – and your body. Learn all about the conditions that can affect your life and health. The more you understand, the more you can make wise choices
  • Take an active role in your treatment by developing a healthy relationship with your care team
  • Avoid tobacco to decrease the risk for heart disease and cancer as well as other smoking-related illnesses
  • Make sure you always have contact numbers or addresses of people, clinics, and health centers that can provide immediate information and necessary medical attention when needed

 

  

Employment: Finding a job that works

The right job can offer you more than income, it can also give you a sense of purpose. It goes without saying that people with bleeding disorders need jobs that will not cause frequent bruising or bleeding and that will also provide good health insurance.

The right to remain silent

You have the right to say nothing about your hemophilia as long as it does not keep you from performing your job. Under the Americans with Disabilities Act (ADA), people with medical impairments are protected from discrimination. Simply put: your employer should hire you based on your background and abilities, not your hemophilia.

Workplace conversations

One reason to reveal your severe bleeding disorder is that it gives you a chance to educate your employer from the start. You can feel more in control of your situation and have the ability to ease their worries. Since finding the right job is a journey, you may want to go the extra mile and have someone from your local HTC contact your employer with reassuring, written information.

  

Insurance: Examining your options

Understanding the aging process is essential to your physical health. Understanding the insurance process can be just as vital. If you are not part of a group plan established by your employer, here are some essential points:

  • US residents become eligible for Medicare benefits when they turn 65. Some people with bleeding disorders may qualify for Medicare much sooner than that if their condition is severe enough for them to qualify as disabled under government guidelines
  • There are 4 parts to Medicare. They can be broken down as follows:
    • Part A, which pays for hospitalization
    • Part B, which covers major medical expenses
    • Part C, also known as Medicare Advantage, which gives Medicare beneficiaries the option to receive Medicare benefits through private health plans
    • Part D, which covers prescription drugs

Beginning in January 2014, individuals under 65 years of age with income below 133 percent of the federal poverty level will also be eligible for Medicaid.