Learning about the disease you are dealing with is crucial in launching an online or local donor drive
How can you inspire others to care about your concerns if you can't explain the cause to them? You want to be able to answer the following questions:
- What is the name of the condition?
- How do you pronounce it?
- What causes it or is the cause unknown?
- What supportive care is available while a marrow donor is sought? I.E. blood and platelet transfusions, medications, chemo, etc.
- How urgent is the patient's need? How long can they wait for a transplant?
- What is the most likely outcome without a transplant?
- How will a transplant help?
How do you learn more about the disease? If you are the patient your doctors will give you some basic information on your condition that you can use to answer these questions.
If you are a family member, friend or volunteer you can go online and do some basic research using websites. Sites to look at would be those of recognized marrow donor programs, hospitals or treatment centers such as:
This is just a short sample of the sites that will hold the information you need. Your condition will very likely have it's own specialized support site or foundation where you can find the information you are seeking. To find more go to www.Google.com and enter the name of the disease in the search field.