Fear And Sickness MDS

it's all about Experience

My personal experience has been that the hardest moment to deal with a diagnosis is when it is first given. You're thirsty for information, but you're still processing the diagnosis and its potential ramifications. The two can make for an unpleasant combination. MDS is now just another part of my life for the most part, and it doesn't affect me as much as it used to. I'm not going to lie and say I don't get nervous about it from time to time, but it doesn't happen very often.

You must be cautious of information overload. You must keep in mind that, while there is a theoretically increased risk of AML, the majority of the statistics are based on an older age group receiving active treatment, who are statistically more prone to develop a variety of diseases. If you're a younger patient, you're more likely to be a good candidate for a bone marrow transplant, and the speed with which new medicines have been developed in the previous ten years bodes well for the future. So, just because something happens in the future doesn't imply there won't be options.

The most important thing to emphasize is that you are in the greatest possible position for someone who has been diagnosed with MDS: have proven long-term stability, counts are only slightly above normal, and do not require active treatment. Many other people require immediate therapy after being diagnosed.

I've also found that participating in the Patient Support Group has been beneficial, and if you have the opportunity, I would recommend attending a Patient Forum since it is quite beneficial to make touch with other patients - the condition can make you feel very isolated.