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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:
PNH I cells, or Type I cells: These cells respond in a healthy way to the
complement system…
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PNH is considered chronic. That means it lasts for a long time. The only known cure is a
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But…
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Doctors sometimes refer to particular drugs as an “active treatment” or “active drug therapy.” Active treatments treat the underlying cause of the
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal…
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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.
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When should I start looking for a suitable donor?
If your doctor thinks you may be a candidate for a
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
/stem cell transplant in the future, start looking for a donor right away. Only about 3 out of every 10 people can find a
matched related donor
matched related donor…
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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 - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
treatment is designed to increase the number of healthy…
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Derek was turning 45 and had noticed occasional swelling in his legs. Due to a family history of heart disease, his wife, Amy, was uneasy, noticing this symptom. She encouraged Derek to see his doctor for more thorough testing.
At the primary care physician’s office, Derek had a Complete Blood Count. The blood test showed he was anemic, but nothing else unusual. Derek’s family doctor referred…
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On April 15, 2007, my husband Jeff, age 39, tucked our two and three year old boys into bed. He suddenly yelled down to me in a concerned voice, “Honey, my vision is slightly distorted, and it must be a migraine. I’m going to lay down for a bit.”
I was not extremely concerned since Jeff had gotten migraines in the past. But the next day, the other eye was also adversely affected in the same way…
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Cyclosporine
Cyclosporine:
Cyclosporine is used along with antithymocyte globulin (ATG), another immunosuppressant, for treating aplastic anemia and some other forms of bone marrow failure.
is a drug that lowers your body's immune response. Cyclosporine is used along with
antithymocyte globulin
antithymocyte globulin:
ATG is an immunosuppressant, a drug that lowers the body'…
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Between 600 and 900 people are diagnosed with
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 - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
each year…
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What is Graft vs Host Disease or GVHD?
There are two types of GVHD that can range from mild to life-threatening:
Acute GVHD most commonly occurs within the first 100 days after transplant and, while it can affect any part of the body, it typically affects the patient’s skin, liver, stomach and intestines.
Chronic GVHD happens more than 100 days after…
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This is an individual decision and should be discussed in detail with your doctor and the medical team that would be involved in either treatment approach. They can help you understand your specific risks and potential benefits of these options.
The main goal of
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to…
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When
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
transplants were first done, doctors used actual bone marrow from a donor. This was put into the patient’s blood stream where it would find its way to the bone marrow and started to grow. This process was called a
bone marrow transplant
bone marrow transplant:
A…
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Because you have PNH, everyday events can be more risky for you than for healthy people. Here are some examples.
Airplane Travel and High Altitudes
The farther you get from earth, the less oxygen there is. If you have
anemia
anemia:
(uh-NEE-mee-uh) A condition in which there is a shortage of red blood cells in the bloodstream. This causes a low red blood cell count. Symptoms of anemia…
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It is important to weigh both the risks and the benefits of a
bone marrow
bone marrow:
The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow.
/stem cell transplant. A transplant doctor can answer your questions and help you decide if a transplant is an option for you.
A
bone marrow transplant
bone marrow transplant:
A bone marrow transplant (BMT…
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If you have a bone marrow failure disease like aplastic anemia, MDS or PNH, and your doctor thinks you may be a candidate for a bone marrow or stem cell transplant, you should start looking for a donor now. It can take a long time to find a matched donor. This section provides information and resources on bone…
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Doctors will sometimes refer to certain treatments as supportive therapy or
supportive care
supportive care:
Care given to improve the quality of life, or comfort, of a person with a chronic illness. Supportive care treats the symptoms rather than the underlying cause of a disease. The goal is to help the patient feel better. Patients with low blood counts may be given blood…
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My odyssey with
bone marrow failure
bone marrow failure:
A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be…
diseases began on Mother’s Day,…
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Because you have
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 - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
, everyday events can be more risky for…
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The
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 - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
& MDS International Foundation focuses much of…
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