treatment

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.

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.

Cyclosporine is an immunosuppressive drug that works by preventing T-lymphocytes from becoming active. Once the T-lymphocytes are turned off, they stop attacking

Cyclosporine is a drug that lowers your body's immune response. Cyclosporine is used along with antithymocyte globulin (ATG), another immunosuppressant, for treating

It is important to weigh both the risks and the benefits of a bone marrow/stem cell transplant. A transplant doctor can answer your questions and help you decide if a transplant is an option for you.

Doctors sometimes refer to particular drugs as an “active treatment” or “active drug therapy.” Active treatments treat the underlying cause of the

Doctors will sometimes refer to certain treatments as supportive therapy or supportive care. They help you manage the symptoms of your disease, although they do not treat the underlying cause of the disease.

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.

PNH is considered a chronic disease meaning that it lasts a long time. The only potential cure is a