Disease Won't Run My Life
My odyssey with bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells.
Paroxysmal Nocturnal Hemoglobinuria (PNH)
Health Related Quality of Life and Well-Being
Health related quality of life (HRQoL) is a multi-dimensional concept that includes physical, mental, emotional, and social functioning. It goes beyond direct measures of health such as life expectancy, and causes of death; and focuses on the impact health status has on quality of life. It is important to understand how this relates to “well-being”, which assesses the positive aspects of a person’s life, such as positive emotions and life satisfaction.
Why Research is Important: Understanding Research Articles Part II
In the last edition, “Understanding Research Articles Part I” explained the sections commonly found in research articles and explained further that reading a scientific paper is very different from reading an article in a newspaper or blog. The second part of this article provides you with tips to help you better understand how to read research articles.
Here are a few suggestions for how to read/ the order to read a research article:
Clinical Trials Report for July 2015
We have highlighted some clinical trials currently recruiting patients. Each has a specific purpose related to aplastic anemia, MDS, or PNH. These clinical trials (also known as research studies) were obtained from www.clinicaltrials.gov, the federal web site that presents information on clinical trials worldwide. To narrow down your search criteria, use the advanced search feature found on the home page.
Why Research is Important: Understanding Research Articles Part I
The medical care we enjoy today is built upon decades of effort by physicians, researchers, and other medical professionals investigating the causes of, and potential treatments for disease.
Hope in Action
This year marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria pa
Clinical Trials Report for June 2015
We have highlighted some clinical trials currently recruiting patients. Each has a specific purpose related to aplastic anemia, MDS, or PNH.
The Transplantation Procedure
What medical tests and exams happen before a stem cell transplant?
Your doctors will want to make sure you're healthy enough to have a stem cell transplant. They also will want to find out whether you have any medical problems that could cause complications after the transplant. You may have:
Blood Tests
Before a stem cell transplant, you might have blood tests to check for HIV, herpes, pregnancy, and other conditions. These tests help your doctors learn about your overall health.
Chest X-Ray and Lung Function Tests
Finding a Stem Cell Donor
When should I start looking for a suitable donor?
If your doctor thinks you may be a candidate for a bone marrow bone marrow: The soft, spongy tissue inside most bones.
Biting into the Elephant
I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong, but they didn’t know what it was.