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.
Emma Pritchett
A Story of Hope
“Faith, hope and endurance are imperative to living a life full of possibilities with PNH,” says Emma Pritchett, who has lived with paroxysmal nocturnal hemoglobinuria for 20 years. “The diagnosis was a shock because the disease is so rare.”
Emma and her husband Dennis, a scheduling manager for Carrier Transicold United Technologies, live in Watkinsville, Georgia. They were married in 1993 and were eager to start their family. They were elated when Emma became pregnant but soon noticed...
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
Aplastic Anemia Patient Meets Physician Who Treated Her 30 Years Ago
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 are just beginning the journey, or...
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
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...
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 months of constant anxiety and blood...
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...