Paroxysmal Nocturnal Hemoglobinuria (PNH)

Caregiver Stress

Don’t deny or ignore the fact that being a caregiver will have an effect on you.

Recent Diagnosis

Parents of children newly diagnosed with a bone marrow failure bone marrow failure: A condition that occurs when the bone marrow s

The National Family Caregivers Association's Director of Caregiver Wellness Programs, Jane Meier Hamilton, RN, MSN, has been a nurse for 40 years and family caregiver for 20 years. In a recent interview, she offered advice for family caregivers.

Is it true to say that many people don’t realize that they are caregivers?

When bone marrow bone marrow: The soft, spongy tissue inside most bones.

PNH is a very rare disease. Many doctors have never seen a case of it. So people with PNH may have symptoms for several years before getting a correct diagnosis. Many tests and tools are used to diagnose PNH and find out how severe it is.

PNH can cause variety of symptoms. These can vary greatly from person to person. You may have many symptoms, or just one or two. And you may get a new symptom at any point in the course of your illness.

Because patients need help in different ways, we offer a variety of support services. From the patient/family HelpLine and support networks to live conferences, online classes and volunteer events, our aim is to positively impact as many lives as we can. Our community members contribute to that goal by sharing their own inspirational Stories of Hope, supporting each other's need to stay positive and motivated.

Diseases like aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells

PNH occurs because of a genetic change in bone marrow bone marrow: The soft, spongy tissue inside most bones.

PNH, or   Paroxysmal nocturnal hemoglobinuria Paroxysmal nocturnal hemog