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In this webinar, patients diagnosed with MDS discuss their patient journey and share their personal experiences.
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My husband David’s journey with MDS began in April 2014, when it was discovered almost by chance while we were on vacation. David was bitten by a brown recluse spider and had a very severe reaction to it. He had to be hospitalized, which is when he got his first blood test in years. The doctor noted that his blood counts were low and, while he didn’t rule out that the spider bite might have…
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At the age of 3, I became ill with a rare blood disorder. I was bruising easily, and my platelet count was dangerously low. I was diagnosed to have ITP, had my spleen removed, and thought I was cured. However, my disease was either dormant or morphing into something else. My symptoms recurred with pregnancy, and after my second child was born, my disease was never dormant again. In 1993…
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After Liviya’s diagnosis of severe
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
, my wife Rebekah and…
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The first indication that something was wrong came with a routine blood test. Lots of H's (high) and L's (low) dotted my CBC (complete blood count). My primary care provider said it probably was ‘nothing’, but I might want to follow up with a
hematologist
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs.…
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My mom is a
pharmacist
pharmacist:
A highly trained and licensed professional whose job concerns the preparation, distribution, and use of prescription drugs. A pharmacist also advises patients, as well as physicians and other health practitioners, on the selection, dosages, interactions, and side effects of medications.
and I currently attend the University of Missouri-Kansas City…
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Kellie was diagnosed with
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
in March 2005 when she was…
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Thomas is thankful he has a future. He wasn’t so sure when in March 2011 he was told as a high school freshman that “he wouldn’t be playing paintball for a while.” Thomas was diagnosed with MDS that quickly progressed into
acute myeloid leukemia
acute myeloid leukemia:
(uh-KYOOT my-uh-LOYD loo-KEE-mee-uh) A cancer of the blood cells. It happens when very young white blood cells (blasts…
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In March, Annette had the honor of singing a solo for her high school senior show. She chose to sing “I Was Here”, a song recorded by the group Lady Antebellum and others. The lyrics for the chorus start with “I wanna do something that matters – say something different – something that sets the whole world on its ear – I wanna do something better with the time I’ve been given.” She considers it…
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“Emma was active in raising awareness for bone marrow failure even before her arrival at NIH.” – Lydia Seiders
I knew from prior experience with advocacy for other Illnesses, that “t-shirt advocacy” really works – they are great conversation starters. After I had read and re-read AAMDSIF’s patient guide, I felt ready to begin advocacy for
aplastic anemia
aplastic anemia:
(ay-…
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When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.…
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I sat quietly in the
oncologist
oncologist:
(on-KAH-luh-jist) A doctor who specializes in the treatment and prevention of cancer.
’s office. The doctor confirmed that my diagnosis was MDS and calmly stated, “The average survival term for your kind of MDS is 104 months.” I felt the room spin.
I never have been healthy, and suffered from upper respiratory infections all my life.…
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Texas native John Vasquez led an active life until he started to experience unusual symptoms in 2015, including an incidence of numbness on one side of his body. The 20-year-old was soon diagnosed with
aplastic anemia
aplastic anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells,…
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I never thought I would be diagnosed with cancer. I taught exercise classes, walked every day, ate a Mediterranean diet, and paid attention to products I used on my skin. I became a certified health coach and taught healthy living classes.
But I did get a cancer diagnosis -- a rare blood cancer called MDS (myelodysplastic syndrome). Specifically, it was the
Refractory…
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In December 1992, I was an 8-year-old, halfway through second grade, when strep throat and a urinary tract infection just wouldn’t go away. A late-night trip to the emergency room revealed dangerously low levels of platelets, which explained this and the severe bruising all over my body and rashes on my joints. My platelets were under 2,000 and I was supposed to have 250,000.
I was sent to…
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In May 2017, life was good and I was “living the dream”. I had been working full time for about a year after graduating from the University of Kentucky. I was living in Columbus, Ohio, working for an organization that supports children with childhood cancer and catastrophic disease. Everything was on track for my future.
I started to feel sick. At first it seemed like flu-like symptoms of…
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My Diagnosis
In the summer of 2014 I noticed ongoing bruising all over my body. At first, I thought it might have to do with my diet (low iron), but soon I noticed a new kind of mark on my skin, almost having a bulls-eye appearance. By end of summer I knew I had to do something about this.
I went to my primary care doctor who ran a CBC (complete blood count).…
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In October 2017 I was hospitalized for extreme dizziness, vomiting, fatigue, bruising, and shortness of breath. As an active, healthy person, having these symptoms was worrisome. My husband took me to the emergency room, where they performed a series of tests. We waited for my results, and a nurse looked at me and asked if I realized how pale I looked, and neither my husband or I had even noticed…
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As a girl in South Africa, I was healthy and active. I started college at the University of Limpopo, studying Business/Accounting in 2011.
The next year, though, I started having unusual symptoms. I felt so exhausted that I had trouble getting out of bed. Then in October I noticed other changes. My skin was pale, and I had bruises all over. Because my skin is light brown, I…
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This new series will follow Stacy as she navigates the world of bone marrow failure disease. We’ll release each new chapter as she shares what she experiences. Watch for announcements and updates!
Part 1: Symptoms and diagnosis
My name is Stacy Bravo I have been diagnosed with a rare disease. I have
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-…
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