Patient Videos

Module 1: Understanding Myelodysplastic Syndromes

George's story: How did you find out you had MDS?

George describes the initial symptoms he experienced and the low counts of platelets, red cells and white cells he had leading up to his diagnosis of myelodysplastic syndromes (MDS).

In kind memory of the passing of George Benson who wanted to share his experiences with others suffering from MDS.

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George's story: What has been the biggest challenge for you with your MDS?

George describes the biggest challenge he has faced with his MDS, which is the pain and discomfort he experiences after bone marrow tests.

In kind memory of the passing of George Benson who wanted to share his experiences with others suffering from MDS.

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George's story: What has been the biggest surprise for you with your MDS?

George describes the biggest surprises he has had with his MDS. He has been able to maintain a full quality of life and hasn’t been as sick as he could have been. He also talks about the tremendous support he has received from the MDS Foundation.

In kind memory of the passing of George Benson who wanted to share his experiences with others suffering from MDS.

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George's story: What advice do you have for other patients on their journey with MDS?

George shares practical advice for other people on their journey with myelodysplastic syndromes (MDS). He recommends staying as healthy as possible by maintaining healthy habits and staying away from germs.

In kind memory of the passing of George Benson who wanted to share his experiences with others suffering from MDS.

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David's story: What advice do you have for other patients on their journey with MDS?

David shares his experiences and advice for patient’s who are struggling with a diagnosis of myelodysplastic syndromes (MDS). He says it is very important to ask questions, understand, be prepared, and stay positive. He also recommends reaching out to mentors for support and advice.

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Module 2: Diagnosis of MDS

George's story: How was your MDS diagnosed?

George describes the process and tests he went through when he was diagnosed with myelodysplastic syndromes (MDS). He also talks about what his doctors told him and how he felt when he learned of his diagnosis.

In kind memory of the passing of George Benson who wanted to share his experiences with others suffering from MDS.

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Module 3: Management and Treatment of MDS

David's story: How was your MDS initially treated?

David talks about the initial types of treatment he was given for his MDS, before he had his blood and marrow transplant (BMT).

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Module 4: Blood and Marrow Transplantation in MDS

David's story: How did you find out you had MDS and needed a blood and marrow transplant?

David describes the tests he underwent for the diagnosis of his MDS, as well as the experiences he had leading to his blood and marrow transplant (BMT).

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David's story: What was your experience with blood and marrow transplantation?

David shares his experiences with blood and marrow transplant (BMT). He talks about what he went through during and after the BMT, and shares advice for others.

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Module 5: Understanding MDS-related Anemia

Abby’s story: How did you find out you had MDS-related Anemia?

Abby describes the symptoms she experienced leading up to her diagnosis of MDS-related anemia. She had severe back pain and was scheduled for back surgery. She also experienced severe fatigue but she was convinced that this was from lack of sleep due to her back pain. Before her surgery, it was discovered that she had a low hemoglobin level and was referred to an oncologist who did a bone marrow biopsy. The biopsy result confirmed she had MDS-related anemia.

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Barry’s story: How did you find out you had MDS-related Anemia?

Barry describes how he found out he had MDS-related anemia. He was due to have surgery to remove a bone spur from his foot, and during a pre-operation blood test it was discovered that he had anemia due to an extremely low hemoglobin count. Subsequently, he had a bone marrow test done and a week later he was diagnosed with MDS with chromosome deletion 5q.

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Bill’s story: How did you find out you had MDS-related Anemia?

Bill talks about his experiences leading up to his diagnosis of MDS-related anemia. He first noticed an abnormality in his blood counts over a decade ago. Blood test results from his regular checkups revealed that his hemoglobin and neutrophil counts were low to below normal range. Although Bill says that he never experienced any physical symptoms or discomfort, eventually his hemoglobin and neutrophil counts dropped even more. At this point, his oncologist began treating him with an erythropoiesis stimulating agent (ESA) to try to slow down and improve his anemia.

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Abby’s story: How was your MDS-related Anemia diagnosed?

Abby discusses the symptoms and challenges she experienced in her daily life – such as severe fatigue while working or when doing simple tasks like climbing stairs. When she discussed this with her oncologist, several blood tests and a bone marrow biopsy were performed. The bone marrow biopsy result gave Abby a definitive diagnosis that she had MDS-related anemia.

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Barry’s story: How was your MDS-related Anemia diagnosed?

Barry describes the tests he had that confirmed his diagnosis of MDS-related anemia. A bone marrow test confirmed that his anemia was due to MDS. Barry says he was initially scared to think about the idea of having cancer. He says that it’s not been scary of late however, as he’s lived with his condition for some time now, and still has hope for the future.

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Bill’s story: How was your MDS-related Anemia diagnosed?

Bill explains that his anemia was a concern and that he wasn’t sure if it was MDS-related. It was not until his blood counts dropped significantly that he decided to get a bone marrow biopsy. The test detected a significant number of bone marrow blast cells, which led to Bill’s diagnosis of having MDS and the related anemia.

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Module 6: Managing and Treating MDS-related Anemia

Abby’s story: What has been the biggest challenge with your MDS-related anemia?

Abby reveals that the biggest challenge of her MDS-related anemia is dealing with the fatigue and coinciding depression of not being able to move and think as quickly as she was once able. Abby says that finding something to keep her busy helps her to get through each day.

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Barry’s story: What has been the biggest challenge with your MDS-related anemia?

Barry talks about the main challenges he has faced with his MDS-related anemia. He faced a mental challenge that he was able to overcome. He says he was fortunate to never experience any side effects from his lenalidomide and azacitidine treatments. In the last few years however, Barry says that his biggest challenge is that he now feels a lack of strength.

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Bill’s story: What has been the biggest challenge with your MDS-related anemia?

Bill describes how his greatest challenge with his MDS-related anemia has been adjusting to the amount of time the treatments take out of his day. He attributes this to the lengthy amount of time required for transfusions but also for various chemotherapy treatments.

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Abby’s story: What has been the greatest success and greatest challenge with your MDS-related Anemia treatment?

Abby talks about the treatments she receives for MDS-related anemia, which include medications to increase her red blood cell and hemoglobin levels, as well as blood transfusions. While these offer help, they are unfortunately not cures, and Abby discusses how a significant portion of time every week needs to be devoted to receiving these treatments.

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Barry’s story: What has been the greatest success and greatest challenge with your MDS-related Anemia treatment?

Barry talks about the successes and challenges he has experienced with the various treatments he has been on for this MDS, including lenalidomide, azacitidine, and blood transfusions. He also talks about navigating the costs of treatment, which for some people can be quite financially burdensome.

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Bill’s story: What has been the greatest success and greatest challenge with your MDS-related Anemia treatment?

Bill reveals that his greatest success with his MDS-related anemia treatment occurred after he underwent four treatment cycles of decitabine/venetoclax. He describes how his blood counts increased to a level where he was able to go without a blood transfusion for a period of six months.

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Abby’s story: What advice do you have for other patients on their journey with MDS-related anemia?

Abby shares her advice for other people on their journey with MDS-related anemia. She says to remain strong and to stay focused on something positive in the future. When visiting her doctor, she recommends writing down questions beforehand, and not being shy to ask questions. She also recommends spending time with family and friends, networking with other patients, and reaching out to the MDS Foundation for information and support.

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Barry’s story: What advice do you have for other patients on their journey with MDS-related anemia?

Barry shares his advice for other patients who have MDS-related anemia. He recommends reaching out to the MDS Foundation and learning as much as you can about the condition so that you know what to expect and can overcome fears. He also suggests participating in meetings with other patients and listening to their experiences because it will help you to self-reflect on how your life has also changed.

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Bill’s story: What advice do you have for other patients on their journey with MDS-related anemia?

Bill shares his advice about living with MDS-related anemia. He recommends learning as much as possible about the disease and doing research to find the best doctors and facilities in your area that specialize in treating your specific condition. Finally, Bill says that it’s very important to not dwell on the disease but rather to keep living your life as normally and as long as you possibly can.

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