[DanL]

Sarah,

a diagnosis of SAA can be a little frightening. it can lower your normal blood counts of white blood cells, red blood cells, and platelets. These deficiencies may cause you to become more prone to getting ill, to bruise or bleed more from small bumps or cuts, and may cause shortness of breath due to lower red blood cell counts.

There are a lot of treatment options available for SAA, many of them starting with immune suppression, by taking drugs such as cyclosporine, prednisone, or some other drug. Many patients are eventually treated with anti-thymocyte globulin, (ATG), and then have another immune suppressive drug for maintenance. If none of these reach a solution, a bone marrow transplant may be offered, if you have a suitable match.

SAA, like most bone marrow failure diseases is complex and highly variable based on the patient. It is normally good to seek out second opinions and it is crucial to find a doctor or team of doctors that you trust and are very comfortable with. You should be able to talk to the doctor about any of your questions or concerns and get responses that are thorough and help you understand what your disease is, and what to expect from treatment. Take your time and learn a little bit at a time -- too much information, especially from the internet -- can be overwhelming, and even worse, outdated and incorrect. There have been a lot of advancements that aren't fully published, and many of the statistics that you will see will paint a picture that you will find to be unpleasant. Since each patient is different, it is really hard to glean valid information for your case, so please keep this in mind when you review articles on the internet. Most of this information lag is due to the nature of statistics. It is hard to guess what impact the advances in diagnosis and treatment has done when you try to do a 10 year study on outcomes. In my case, MDS is not generally diagnosed in people under the age of 40. In fact the average age of diagnosis in the US was 71 when I was diagnosed. The other issue was that there are generally only about 15 de novo mds cases diagnosed in people over the age of 18 and under 40. The only people in that age range that get the disease are people who were born with trisomy 8, or people who have had prior cancers treated by chemotherapy.

That is my cautionary tale about information on the internet - keep all data in check. The treatment options are generally pretty current, but don't tell you much about your individual case.

The key is to be strong, keep active, believe in yourself and the people around you, and stay positive. Get good doctors, stay with your treatments.

Good luck in your journey.

Dan