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Connect, Support, and Share Experiences with fellow MDS Warriors

Living with Myelodysplastic Syndromes can be challenging, but you're not alone on this journey. We're here to listen and support each other through the ups and downs of living with MDS. Take a moment to introduce yourself and tell us about your MDS experience. What's your story, and what are some of the challenges you've faced? Let's connect and offer each other a shoulder to lean on. 🌼

  1. I had never heard of myelodysplastic syndromes when I was diagnosed on June 2, 2017. I had to learn how to pronounce it, spell it, and explain it!

    Throughout my journey with MDS I have thought, Thank goodness I was able to retire! Teaching elementary special education students was exhausting.

    I still believe in keeping busy. Distraction therapy, I call it. When I am working on a project, I don't think as much about MDS. Right now, I am getting new carpet in my living room. My goal is to get the room looking better so I can host a Christmas party for my Sunday School class.

    Don't you love looking forward to activities? I don't mind scrubbing the kitchen floor or raking the back yard, as long as there is something I want to do later. It might be meeting a friend for lunch or settling down with a good book.

    The first four years of MDS I was on Watch and Wait. I had Complete Blood Counts every three months. Two years ago I started having Complete Blood Counts monthly. When my hemoglobin is below ten, I get an injection. These injections are to delay transfusions and chemo.

    Most days I feel fine, but there are some days my get-up-and-go feels like it got-up-and-went.

    When I was first diagnosed, my oncologist showed me a life expectancy chart of ten years. So far, it has been six years living with MDS. I think I will ask Santa Claus for a dart board so I can throw darts at that life expectancy chart!

    1. It sounds like you are living a fulfilling life! And how thoughtful for you to want to have a party for your Sunday school class. My guess is that you will be able to destroy that life expectancy chart in any way you choose! I'm certain the kids you taught were incredibly blessed by your thoughtfulness. Thank you for sharing it with us!

  2. One year ago September 20 was my bone marrow transplant from 24 year old lady from Germany! She saved my life.

    1. You will never forget what she did for you and that is a wonderful memory. Who knows when or where in the future you in turn might reach out and help someone who has a different need. Dennis ( TEAM)

    2. One to go! I hope you get to have a wonderful conversation with her! Warm wishes, Katelynn (team member)

  3. Why hasn’t my Dr. Told me about a bone marrow transplant? I’m in great shape? Only 71 ?

    1. I'm 62 and my Oncologists predict I will need a bone marrow transplant within the next 3 to 4 years. No mention of being over 50.

      My friend in England who is in her 60s just had a bone marrow transplant.

    2. Personally I would seek out a second opinion - Dennis ( TEAM)

  4. Hi I have been diagnosed with MDS-RS-D. I think that’s right. I think that I have been sick for 3-4 years already. I also have heart problems, afib & I have a pacemaker. My MDS is across all 3 lines, red, white and platelets.

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