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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.

Shirley O’Brien

A Remarkable Response in a Clinical Trial

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...

Annie Tighe

Annie Tighe – A Second Transplant Saves Annie

This is the story of my beautiful granddaughter Annie, who celebrated her 13th birthday this April 2014.  It’s also the story of Annie’s big sister Katherine, as well as of her mother Melissa, and her father, Tom (my son).  When my husband and I picked Annie up from pre-school in December of 2005, we noticed bruises on her arms and legs. Melissa looked over her body closely that evening and counted 14 bruises! She immediately took Annie to her pediatrician, who took one look at her and said...

Stephen King

Patient, Educator, and Volunteer

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.” Early Diagnosis...

Jamie Lam

Jamie Lam - PNH Patient Jamie Lam Resumes Favorite Sport

I realized something wasn’t right when I was out of breath from simply walking up a hill to get to class during my senior year in college. I had been an active fencer since high school, and it didn’t make sense that walking up a hill would give me so much trouble. I visited my doctor after graduation, and I was put in the hospital the next day. My nurse came in and told me, “We are paging the doctor who does bone marrow biopsies to come back. He left to go home for the weekend, but I don’t...

Al Meyer

A Rare Case of Aplastic Anemia Later in Life Won't Stop Me

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...

Kendra Arvon

Thankful to Be Here and Alive

I was a very active 17-year-old when I got the news. It was October of 2005, the beginning of high school basketball season in my hometown of Beckley, West Virginia, when I became ill. I thought it was a really bad cold or even the flu, but I was used to being sick and fighting through it, so I didn’t think much about it. I started antibiotics while I continued going to school and playing basketball. I would start to feel better for a while, then BOOM, it would hit me like lightning again. I...

Brittany Springer

Aplastic Anemia Patient “Just Focused on Beating It”

In February of 2011 I was 22-years-old and attending Orange Coast College. One day I began to notice that I was bruising easily. My legs were covered in bruises by the time I went to my doctor.  The doctor told me I was probably anemic and run down due to my work and school schedule. She ran a regular CBC blood test.  The next day,  I was surprised to see I had missed a call from her. It was after five o’clock so I figured I would call her the next day. I was not feeling sick - maybe a little...

Bridget Casey

Bridget Casey – PNH Survivor and Scholarship Recipient Uses Her Faith To Help Others

"I discovered that I might not live to my 40th birthday." One of the last things I expected in life was to be diagnosed with a rare disease.  After completing my PhD in Food Science at the University of Minnesota in 1998 and starting a career as a product development scientist, I began having symptoms of fatigue and easy bruising. It took three years and eight doctors to diagnose the disease as paroxysmal nocturnal hemoglobinuria (PNH). A physician at UCLA finally diagnosed me. ...

Robin Grapa

A spirit of adventure helps her live life to the fullest

I was a freshman in college when I was diagnosed with aplastic anemia. I didn't have a bone marrow donor match, so I opted for the ATG and cyclosporine treatment. After experiencing seizures, which are a rare side effect to the treatment, I began the slow process of recovery. I felt very blessed that my blood counts began to climb, and eventually leveled out around normal and stayed there ever since. It was seven years after my treatment when my doctor mentioned "complete remission" to me. I...

Alani Diaz

Alani tells how he has become his own best advocate

“I never even had a cavity before I was diagnosed with PNH, plenty of denial later, I now live my life with PNH in it and don’t let PNH run my life!” I lead an ordinary life, a healthy life.  My name is Alani and this is my story. I was born in Massachusetts, raised by my single mom.  I grew up with my older brother and little sister. I did ok in school but my passion was for riding bikes and skateboards.  The highlight of my childhood was racing BMX bikes every weekend. My mind enjoyed...
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