diagnosis
Special Issues for People with PNH
How do I get my medical records from a doctor?
If you want a copy of your medical records, you must submit a written request to the hospital or the doctor's office. The law requires that patients provide doctors with written authorization to disclose medical records or the information contained in them. Some hospitals have their own form that needs to be completed. Patients may receive copies of their medical records, however the originals must remain in the physician's or hospital's file. Please consult with your physician's office for access to digital records.
Is aplastic anemia, MDS or PNH inherited?
How long do I have to live?
How long do I have to live?
This is most people’s first question, along with “what can I expect to happen.” The doctor’s answer is called a prognosis (an educated guess about the likely course of your disease and how long you might live). Because each person is unique, and each person’s disease is different, a prognosis can be difficult to make. Also, how a disease progresses over time is unpredictable, and less is known about rare diseases than common diseases.
What are the treatments for MDS?
MDS treatment is designed to increase the number of healthy cells in your blood (blood count). When your blood counts go up you are less likely to need blood from a donor (transfusion), your quality of life becomes better and your symptoms are not as bad.
What is AML?
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.