Newly Diagnosed

There is no specific diet that makes

While it can be difficult to imagine at first, many patients lead happy, fulfilling lives by developing strategies for successfully coping with the physical and emotional aspects of living with

You likely have many questions for your healthcare team. It is important to keep an ongoing list of your questions between appointments. Be sure to take your list with you and keep asking your questions until you get the answers you understand. Don’t be afraid to ask why your doctor is running a test, scheduling a procedure or changing a medication. Here are some sample questions to consider:

About your disease:

Even if you're happy with your doctor and healthcare team, it's OK to get a second, third, or even fourth opinion. Getting a second opinion will not offend your doctor. In fact, most healthcare providers appreciate and encourage another point of view. And it's your right.

These diseases can not be passed down through the genes from parent to child. Most cases of

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

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.

To make sure you get the best care and treatment, it is important to find a doctor with expertise in treating your specific disease. Specialists in