Stories of Hope | Page 6 | Aplastic Anemia and MDS International Foundation

Stories of Hope

To better understand the impact of bone marrow failure, we recommend reading our illuminating human interest stories, told by the people 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.

Jill Whitney

Jill Whitney – Since my diagnosis, my mission has been to fight back

My journey with MDS (myelodysplastic syndromes) began in December 2007 when a game of volleyball with my youngest daughter left my arms bruised from wrist to elbow. This along with frequent headaches and fatigue prompted me to schedule an appointment for a physical. Little did I know my life was about to change forever. We were getting ready to depart on a cruise to Cabo San Lucas, Mexico to celebrate my in-laws’ 50th anniversary; however, my hematologist wouldn't allow me to go until a bone...

Mary Jo Moss

Mary Jo Moss – Aplastic Anemia Patient Meets Physician Who Treated Her 30 Years Ago

in Mary Jo's own words: For so long, I have been quietly racking up the years - 33 in all - since my diagnosis and transplant. I have done so well and had so few problems that I felt I had nothing to share. But as the years have gone by, I have begun to realize how few of us long-term survivors there are and how truly blessed I am to just be alive! By reading the comments when I post a milestone birthday, I am overwhelmed with the response from others who have walked this path, who...

Yajaira Suarez

Yajaira Suarez: Young Aplastic Anemia Patient Grateful That Life is Returning to Normal

My name is Yajaira and I am 24-years-old, and live in Victorville, California. It has been about two years since I was diagnosed with aplastic anemia. I was a very active, outdoor person who played sports. Never did I think in a million years this could ever happen to me, but it did. I had just started my new job where I met Teresa, my manager. After four months of working there, she noticed there was something different about me. My skin was pale and bruised. I would get sick constantly and...

Jordan Brown

Jordan Brown - Family’s Support Spurs Recovery

On July 4th, 2014, my 23-year-old son, Jordan, coming from the Washington DC suburbs, visited us (Barnett and Nelda Brown) in La Place, Louisiana. He wasn’t feeling well, so I convinced him to go to urgent care before leaving to return home. He was given antibiotics because he appeared to have three cysts in his left arm. He made a second trip to urgent care in Virginia to have the cysts lanced and was given a blood test during the procedure. On Monday July 14th, I received a call at 7 am call...

Kimberly Woudenberg

Kimberly Woudenberg – Knowing What it Takes

Walking into a chemotherapy room is not an easy thing to do, even if you know that it is the best thing for you.” I was diagnosed with PNH in 2009 at the age of twenty-two. In my eyes, I was invincible. I could even count how many times I had gotten sick throughout my life on one hand. So accepting the diagnosis was not easy. I was six months pregnant and pushed all of my worries and fears about my disease onto how it would affect my son. After...

Shirley O’Brien

Shirley O’Brien’s Remarkable Response in a Clinical Trial - a Patient's Story

In February 2012, I was diagnosed with myelodysplastic syndrome (MDS), a disease that has no cure except for a stem cell transplant. Because I was in my mid-70s, a bone marrow transplant wasn’t the best option. At the time of the diagnosis, my spouse, Jim, and I had been retired for eight years as professors from the University of Arizona, and we were enjoying busy lives performing at festivals, singing and accompanying ourselves on our digital accordions. We had planned a cruise in less than...

Rasha Iqbal

Rasha Iqbal's Transplant Experience Amplifies Her Desire for Research Career

My hands shivered as I carefully composed the flower on the nurse’s slim hands. “Are you nervous, sweetie?” she asked. I knew the tremors were not due to nervousness, but due to the effects of my medication, cyclosporine. Thankfully, I was still able to articulate the henna designs for my nurses at Duke University Hospital, where I was admitted for four long months. As a way of giving back to the staff, I thought of doing harmless, temporary tattoos for these inspiring people who took...

Stephen King

Stephen King: Patient, Educator, and Volunteer - a Patient's Story

A PNH survivor for more than 25 years, Stephen King speaks about his life as a patient and an advocate in both formal and informal roles -- and offers advice for newly diagnosed PNH patients.  “I’m an engineer with a problem-solving orientation,” says the medical software manager from Atlanta, Georgia. “After my diagnosis, I thought, now that you know what it is, let’s fix it. It took a little time to sink in that there was no quick fix, and I had to learn more about it.”...

this nurse

Barbara Weinstein - "Being able to help and empower people really appealed to me."

At AA&MDSIF, we deeply appreciate the vital role nurses play in patient care – they are wonderful listeners, educators, motivators, and knowledgeable professionals who make a difference every day in the lives of so many patients and families. This past May, in celebration of National Nurses Week, we asked patients to tell us about their favorite nurse. Four different individuals wrote to tell us about one particular nurse - Barbara Weinstein, RN, BSN, CCRP, a Research Nurse Specialist at...

Al Meyer

A Rare Case of Aplastic Anemia Later in Life Doesn’t Stop Al Meyer - a Patient's Story

I grew up in Louisiana - born in New Orleans and raised in Lafayette. I joined the Army, and went to Seattle and worked at Madigan General Hospital where I met my wife. I was then sent to Vietnam. After I returned, I worked for a bank in Seattle for 16 years, becoming a vice president and manager. I helped finance an auto auction as part of this job, and as a result, I fell in love with the car businesses.  I was accepted for a Ford training program that lasted for two years at a Seattle Ford...