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Aging with hemophilia

Learning how to take care of yourself in the face of age-related issues is just as important to people with hemophilia as it is to the rest of the population.

Understanding age-related issues

As we get older, we’re bound to encounter changes in our health that come with age. The difference for someone with a bleeding disorder is that they may be at higher risk for certain age-related issues. Also, these secondary conditions need to be managed carefully, as they may cause or worsen other problems related to hemophilia.

In the past, little was known about the effects of age-related conditions on those within the community. Now, we understand that many of the health concerns the rest of the population faces as they get older may also affect people with hemophilia.

As you age, you should be aware of your risk for the following conditions and the challenges with treating them in the presence of hemophilia.

High blood pressure

People with hemophilia are twice as likely to have abnormally high blood pressure (or hypertension). Because this condition can increase your risk of bleeding regardless of the presence of hemophilia, you should have your blood pressure checked often and – if you have hypertension – make sure you treat both your hemophilia and your elevated blood pressure.

Heart disease

Managing hemophilia over the years can increase your risk for heart disease as you age, since certain factors – like infusion of factor concentrates and HIV infection – may make it more likely. In the event of a heart attack, make sure the treating physician is aware of your bleeding disorder so he or she can take necessary precautions to treat your heart without causing added hemophilia-related complications.

High cholesterol

Cholesterol levels have actually been shown to be lower in people with hemophilia compared to the general population. However, because of the potential increased risk of cardiovascular (heart) disease in hemophilia, cholesterol levels should be measured regularly to check for this issue, which is also called hypercholesterolemia.

Diabetes

It is not known for sure whether the risk of diabetes is higher among people with hemophilia compared to those without it. As you get older – especially if you’re overweight – your blood sugar levels should be checked once each year to test for diabetes.

Osteoporosis

People with osteoporosis have low bone mass and more fragile bones, leading to an increased risk of fracture. Low bone mineral density is common in people with hemophilia, putting you at risk for osteoporosis. To help prevent this condition, talk to your doctor about suitable sports and other weight-bearing activities that can help you maintain your bone health. Learn more about joint disease

Kidney disease

Though everyone over the age of 60 may be at risk for kidney disease (also called renal disease), people with hemophilia may have additional risk factors, including HIV infection, factor inhibitors, and bleeding in their kidneys. If you have high blood pressure or diabetes, this also increases your risk of developing kidney disease. To help keep your kidneys working well, maintain a healthy weight and avoid smoking. You may also want to talk to your doctor about having a regular kidney health check as you age.

Obesity

Obesity is on the rise in the general population, but in people with hemophilia, it has been associated with additional health concerns, including: increased joint pain, increased risk of developing target joints, and an even higher risk of diabetes and heart disease. Regular physical activity is important. If your hemophilia restricts certain activities, talk to a physiotherapist about other options to help you stay active. Learn more about fitness & exercise

Sexual dysfunction

Age-related issues like high blood pressure and diabetes can affect anyone’s sexual health. But people with hemophilia may have added issues that can cause concerns in the bedroom. For example, complications of hemophilia can lead to sexual dysfunction including lack of libido and impotence, as can chronic infections with hepatitis C or HIV. Some men take oral medications for erectile dysfunction (ED), but beware that these ED treatments may cause nosebleeds in people with hemophilia.

Advice on aging with hemophilia

While certain health concerns are more likely as you age – and, in some cases, even more likely if you have hemophilia – there are things you can do to take care of yourself as you get older.

Start with these 10 tips for making the most out of your later years with hemophilia:

  1. Stay active, making sure to take part in weight-bearing activities to help maintain healthy bones, if your joints will allow it.
  2. Have your blood pressure checked regularly, generally aiming for a high of 140/90 mmHg.
  3. Talk to your doctor about steps you can take to lower your cholesterol, if needed, aiming to keep your total cholesterol/HDL ratio 8 or lower.
  4. Keep in mind that, unlike someone without a bleeding disorder, you should NOT take daily Aspirin® to prevent heart problems if you have severe hemophilia.
  5. Consider talking to a dietician if you need help losing weight in order to decrease your risk of certain age- and weight-related conditions, such as diabetes and heart disease.
  6. Check your blood sugar levels once each year to screen for diabetes.
  7. Talk to your doctor about taking calcium and vitamin D supplements to protect from osteoporosis.
  8. If you experience erectile dysfunction, you may want to talk to your doctor about oral medications. However, beware that these ED treatments may cause nosebleeds in people with hemophilia.
  9. Don’t be afraid to make changes to your routine, as well as your home or working environments, to help keep your independence and improve your quality of life.
  10. Look for support from your hemophilia treatment team and/or a psychologist or social worker who can help you deal with the age-related issues you may face. Remember: you are not alone.

An initiative by the ADVANCE Working Group is underway to identify and research key issues in the aging hemophilia population. For more information about this research, visit advance-haemophilia.eu

ADVANCE=Age-related DeVelopmentsANd ComorbiditiEs in hemophilia.

XMYTH: People with hemophilia don’t have long lives.

checkmarkFACT: Children born with hemophilia today can look forward to long, healthy, active lives. In fact, their lifespan is considered to be nearly normal.


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