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Stories of Hope

To better understand the impact of bone marrow failure, we present stories told by the patients, parents, family members, and spouses who are living with these illnesses. Our entire community benefits from the insightful stories patients and family members share with us about their personal journeys.

Mary Miller

Mary Miller: Beyond Watch and Wait - A Mind, Body, Spirit Approach to Living with MDS

In 2005 at age 70, Mary Miller of Doylestown, Pennsylvania was diagnosed with MDS. Now 77, she says of her diagnosis, “My initial reaction was that I had never heard of it, so I looked it up online and scared myself half to death!” Like many MDS patients, the first indication there may be a problem came from experiencing significant fatigue. “I was tired and cold all the time, and my hair began falling out. At first, my primary care physician thought the problem was low thyroid and prescribed...

Kyle Malmstron

Kyle Malmstrom – Saved by Identical Twin, Young Aplastic Anemia Survivor Literally Brings Comfort to Others

Written by Kimberly Malmstrom Our son, Kyle, was a normal active 11-year-old who enjoyed climbing trees, swimming, and running. He loved to run around and play with his friends.  The first week of school last fall was normal for Kyle.  He was excited to see friends and meet his new sixth grade teachers. However, throughout that week, he developed large bruises. Some had known causes - others did not.   Kyle then noticed purple dots (petechiae) on his legs.  By Saturday of Labor Day...

Luke Gane

Luke Gane, Aplastic Anemia Survivor and UCLA Bruin

At the time, Luke Gane considered himself a typical sophomore.  It was July 2008, and Luke was getting ready for the all-important junior year of high school football season. He had his wisdom teeth removed and afterwards, found himself spitting up blood.  It was chalked up to a side-effect of the surgery.  Little did Luke know, his health was in jeopardy.  In the days ahead, Luke became fatigued; shortly thereafter, a 2-hour nose bleed turned into a trip to the emergency room.  After a...

Norma Good

Norma Good’s Life as an MDS Survivor: From Diagnosis to Remission

A grim prognosis In 1989, all three of Norma Good’s blood counts were found to be abnormally low. The hematologist in her home town admitted to not knowing how to handle her rare bone marrow failure condition, so he referred to her to a local clinic which didn’t offer much hope for survival. Not easily deterred, Norma sought out a clinical trial at the National Institutes of Health (NIH) in Bethesda, Maryland. “The NIH is wonderful,” she says. “They’re doing their best to combat these...

Debby Cook

Feeling at home in the muddy water

"May we live like the lotus, at home in the muddy water.” Judith H. Lasater, PhD In 2003, I had no idea who Judith Lasater was, and I was not at all at home in the “muddy water.”  I was a 5th grade teacher, I was hoping to start a family with my husband, and I had plans that in no way involved having a bone marrow failure disease.  And yet, in September that year, a series of doctor appointments led me to Georgetown University Hospital in Washington, DC and to the National Institutes of...

Bunny Williams

Fighting PNH with Perseverance and Spirit

Bunny Williams was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in the spring of 2000. Her symptoms were fatigue, stomach cramps, difficulty swallowing and jaundice. At the Phoenix Regional Patient and Family conference in March 2011, Bunny shared her story with other patients and families at the Celebration of Hope ceremony. In Bunny’s Own Words I would spend a good portion of the day on the sofa.  My husband got the meals, washed dishes, did the laundry and...

Duane Draper

Builds supportive community to help him with MDS and bone marrow transplant

When Duane Draper was diagnosed with MDS in July, 2009, the 57-year-old father of two grown children was asymptomatic and didn’t even realize that there was a problem with his health. Though he had been feeling slightly more fatigued, he attributed it to aging and didn’t worry about it. However, during a  physical, his physician did some routine blood work and discovered that all three of his blood counts were low. “Initially, I was really surprised to learn that my blood counts were low,”...

Mary Upton

Mary Upton, Aplastic Anemia Survivor, Springfield Virginia

After a couple of weeks of constant nose bleeds and mouth ulcers, three doctor visits and a bone marrow biopsy that showed hardly any cells, I was finally diagnosed with Sudden Severe Aplastic Anemia in November 1997 at the age of 45.  NIH would not accept me as a patient and it was through the perseverance of Dr. Robert Brodsky, that Johns Hopkins accepted me, knowing that I was a full-time student with a maximum on my insurance policy that wouldn’t begin to cover all my medical expenses. I...

Rosalie Rifkin

Rosalie Rifkin, Active Grandmother from Tarzana, California

I was diagnosed with MDS in about 2003 at age 63.  I am now 72 years old and will be married 52 years in June.  I have not taken medication for the last three years.  I go to a wonderful doctor at UCLA who is doing research on MDS.  I feel fine and I am not excessively tired.  My hemoglobin is only 7.2, but my doctor says that if I feel alright, I don't need to take any medication. I get up early every morning and walk three to five miles.  I play tennis, go clogging and hike.  I also go to a...
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