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Lifestyle Tips

Little Things May Make a Difference

A few lifestyle tips that may help
Living with paroxysmal nocturnal haemoglobinuria (PNH) can be difficult given the serious and rare nature of the disease. Here are some things that can make your day-to-day life easier.

  1. Keep a journal of your symptoms. Keeping a journal will help you determine how well existing therapies are working for you, which may in turn lead to others that could work for you in the future.
  2. Be sure to tell your doctor what medications you are taking or are considering taking. Tell your doctor about all prescription, over-the-counter, and herbal medications, as well as nutritional vitamins/supplements that you are taking.
  3. Notify your doctor before having any invasive procedure (e.g., dental work, colonoscopy). If you need surgery or other specific medical procedures, your doctor may want to prescribe an antibiotic before your procedure to prevent infection.
  4. Remain aware of your activity level to avoid becoming exhausted. Make a list of the things you need to do and focus on the most important ones first.
  5. Eat a healthy diet and drink plenty of water. Eating right is important for everyone, but it’s especially important for people with chronic illnesses. Giving your body the nutrients it needs while avoiding unnecessary sugars and chemicals can help your body function well. If you are unsure what type of foods you should or should not be eating, ask your doctor or nurse. They can help you plan a diet that’s right for you.
  6. Ask for help. Your condition puts a lot of stress on your body, and it’s very common to be overwhelmed by daily activities. Asking for support from family and friends is important for your health.
  7. These tips are only guidelines for ways you might improve your life with PNH. Click here for a list of online support networks.