MDS Paient ..NEW to this forum

[towncarlady]

Hello,

I have just registered for this forum. I am uncertain about forum procedures, so I will be learning. I have already benefited from the post. I think we all can be a support to each other, since so little is available to us.

I will be happy to interact and share my story.

[Neil Cuadra]

Welcome, towncarlady.

Support comes in many forms: the direct efforts of medical professionals and the support staff at treatment centers, the work done on our behalf by support organizations like the Aplastic Anemia & MDS International Foundation, the printed and online resources that we use on our own, the grounding we get from our family, friends, and communities, and the practical advice and lifted spirits we can get by sharing our experiences with other patients who have traveled the same road.

When we fear for our health and the health of our loved ones, it's easy to feel alone, so it can help to share our stories, including our successes and setbacks. It's easiest to share like this face to face, but MDS is rare so patients don't often meet other MDS patients in person. The Internet gives us the next best thing: a chance to find each other and support each other long distance.

[towncarlady]

Neil,

Thank you for the post. I began research on the internet almost immediately on diagnosis. My research continues. I find that for me being an informed patient helps me as well as my physician. I am very pro-active in my care. In fact, it is a result of my own persistence that I finally got answers to why I was staying sick constantly and staying anemic. On top of that, all test results were coming normal. It was then that I asked my allergist about seeing a hemotologist. Bingo! It was not what I expected to hear.

One of the hardest areas to accept was the disruption or possibly cessation of my Christian music concerts. How can a concert be booked in advance when my medical condition is so unpredictable? I have been able to play for a church which helps fill in the gap.

My family and friends are very supportive, but acceptance on their part is just as hard. Coping with a serious illness does change one's life.

To those who may read this post, please feel free to ask questions. We who are MDS patients do not have as much information as we would like. I have found that the Lymphoma and Leukemia Society is a great source of information.