Tips for Taking Care of Yourself When You Have PNH

Eating healthy is especially important when you have paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder where your immune system destroys red blood cells so they can’t carry oxygen throughout your body like they should.  To help your body make red blood cells and keep your energy up, eat lots of fruit, vegetables, and whole grains. Stay away from fast food, processed foods, starches, and foods with a lot of salt.

This can help you stay away from the sugar and chemicals found in most fruit juices and soda. It’s also a good idea to limit alcohol and caffeine. Staying hydrated is really important, and water is your best bet. Caffeine and alcohol also can mess with your sleep. Aim for 8 glasses of water each day.

PNH can make you tired. Getting restful ZZZs can help. Set a regular sleep schedule at night and try not to nap during the day. Find ways to relax before bedtime, like taking a warm bath, reading, or listening to music. That can get your mind and body in the right place for a good night’s sleep.

Being active is good for your physical and mental health, and it can help you sleep better at night. Easy things like taking a walk, or doing housework or yard work count. Be sure to talk with your doctor about which activities are right for you. In some cases, heavy exercise can cause a buildup of lactic acid in muscle tissue.

When you have PNH, it’s important to do all you can to protect yourself from illness and infection. Ask your doctor about which vaccines you need, and talk with your friends, family, and caregivers about staying on top of their vaccinations so they don’t pass anything along to you.

Information is key for you, your doctors, and your support system. Keep track of things like new symptoms, lifestyle changes, and any vitamins or supplements you take. It’s also a good idea to have a list of all your medications, including over-the-counter ones.

Living with PNH can be stressful. Talking about your feelings and learning from others can make a big difference. Create a network of friends, family, and other people who have PNH that you can lean on to make your day to day a bit easier.

Adding some alternative therapies to your plan alongside medical treatments can improve your quality of life and ease stress. Ask your doctor about things like counseling, aromatherapy, massage therapy, meditation, and visualization.

Before any trip, make sure you understand the risks involved in where you’re going and how you’ll get there. For example, flying in a plane or being at higher elevations can cause issues if you have anemia because there’s less oxygen in those situations. Talk with your doctor and get a red blood cell count before you go anywhere.

Surgery carries specific risks for people who have PNH because there’s a greater chance of problems like blood clots or serious bleeding. Your doctor may recommend antibiotics before a procedure to prevent infections, and you may need to take a blood thinner afterward to prevent clotting.

Having a baby can make certain things -- like blood clots, bone marrow issues, and preeclampsia (very high blood pressure) -- more likely for women who have PNH. There are some risks for babies, too, like low birth weight or slow development. If you're pregnant, or thinking of getting pregnant, talk with an obstetrician who’s familiar with PNH and high-risk births.

If you’re sexually active and want to prevent pregnancy, certain kinds of birth control are better than others if you have PNH. Condoms for men and progesterone implants for women work best. Doctors don't recommend birth control pills because they can make blood clots more likely.