How many people are diagnosed with PNH each year?
PNH can strike people of any age, race or gender. Only about 500 people are diagnosed with PNH in the U.S. each year. PNH tends to be more common in adults in their thirties and early forties.
Paroxysmal Nocturnal Hemoglobinuria (PNH)
What is PNH?
PNH (paroxysmal nocturnal hemoglobinuria hemoglobinuria: (hee-muh-gloe-buh-NYOOR-ee-uh) The presence of hemoglobin in the urine. ) is a very rare blood disease that causes red blood cells to break apart. PNH occurs because of a genetic change to some of your blood-forming stem cells stem cells: Cells in the body that develop into other cells. There are two main sources of stem cells. Embryonic stem cells come from human embryos and are used in medical research. Adult stem cells in the body repair and maintain the organ or tissue in which they are found. Blood-forming (hemapoietic) stem… . These defective stem cells become PNH blood cells that are missing an important coating (protein) that protects them from your immune system. If you have PNH, there will be times when your immune system destroys many red blood cells very quickly, causing low red blood cell red blood cell: The most numerous type of blood cell in healthy people. Red blood cells contain hemoglobin, a protein that picks up oxygen in the lungs and brings it to cells in all parts of the body. Also called erythrocyte, RBC. counts, as well as blood clots, muscle spasms and dark urine. This destruction of blood cells is called hemolysis hemolysis: (hi-MOL-uh-suss) The destruction of red blood cells. .
Complementary and Alternative Therapies
What is Complementary and Alternative Medicine (CAM)?
CAM is generally defined as a group of diverse medical and health care systems, practices and products that are not generally considered part of conventional medicine, according to the National Center for Co
Sexuality and Intimacy
Intimacy
"Intimacy need not end with bone marrow failure bone marrow failure: A condition that occurs when the bone marrow s
Emotional Health
Coping Emotionally with Bone Marrow Failure Disease
A disease diagnosis is unquestionably a difficult life event. Nevertheless, many patients develop a positive attitude about managing stress and undergoing treatment - and you can too.
Fatigue
What fatigue is (and isn’t)
Most patients who are diagnosed with a bone marrow failure bone marrow failure: A condition that occurs when the
Exercise
Why Exercise?
The many benefits of regular exercise have been known for years, and each year new research data supports this.
Apart from enhancing overall health and quality of life, exercise improves physical functioning of your body, improves efficiency of heart and lungs, strengthens and firms muscles, and reduces tension, anxiety and depression.
Nutrition
Proper nutrition is important to optimize blood production and maintain general overall health. People with bone marrow failure bone marrow failure:
PNH: Treatments
PNH is considered chronic. That means it lasts for a long time.
PNH: Diagnosis
How does my doctor know I have PNH?
PNH is a rare disease. Many doctors have never seen a case of it. So people with PNH may have symptoms for several years before they get a correct diagnosis.
3 Types of Blood Cells
With PNH, your doctor can usually divide your blood cells into 3 types: