MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • in reply to: MDS Patients & Caregivers Your Help is Needed! #61845
    Shaunna Robey
    Participant

    I’m not sure if we fit what you are looking for. My special needs adult daughter, current age 45, has MDS-RS, diagnosed 3 years ago. She has other co morbidities as well. I would like to participate if she fits in your search. No need for the stipend. We live in Virginia, USA

    in reply to: multiple diagnosis #53756
    Shaunna Robey
    Participant

    Thank you for your input, Peggy and Kathy. Thanks for the advice. Fortunately, I am a retired ICU nurse and my husband is a newly retired surgeon. Unfortunately, my daughters, PCP, neurologist, and oncologist either retired or left their practices this year. We took that as an opportunity to move where medical resources are much closer and travel time is short. We are in the process of getting settled with a whole new team. With the pandemic, it’s taken some time. When I communicate with one provider, I send the message to all, thanks to on-line patient portals. Her H & H are currently stable but is struggling with a new compression fracture. Keeping a positive attitude and trying to give her, her best life, but it’s difficult with the MDS bone pain as well as the multiple fractures.

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