Stories of Hope | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

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.

Shauna McMillan

“Never Lose Faith!” Shauna’s Update

When Shauna was diagnosed with MDS, she knew she would have to leave her home in Alaska for treatment.  She chose to move to North Carolina where her extended family lived.  With access to specialists there, and having a supportive network, this proved to be an excellent plan. Shauna began the ATG protocol in 2016.  After completing this treatment, she remained transfusion-dependent.  Yet she never gave up.  Then, in September, 2017, she began a treatment regimen with Decitabine.  This regimen...

Jane Biehl, PhD

Never Give Up Hope

I am thrilled because I have already written two articles for AAMDS and am now writing a third one at their request. I am so grateful to still be well enough to do this. The first article, written in 2017, talked about my initial diagnosis in 2010 of MDS del5Q. MDS is separated into 5 categories and typically patients live the longest with this extremely rare type.  I had a very insensitive oncologist who told me, right after the diagnosis, that the average life span was 104 months. I was...

Dianne Witter

"Let's Roll:" What the Heroes of 9/11 can Teach us about Facing Blood Cancer

The morning of 9/11/01 was a doubly surreal experience for me. I was waiting for an appointment with my doctor at M. D. Anderson's Leukemia Center in Houston while chaos erupted in America. The waiting room was packed, as usual, with people at various stages of their own life-threatening events, and I was struck by the relative calm in this room compared to the state of disbelief and panic playing out on TVs throughout the country. I realized that each of us in that waiting room had already...

Danielle Sulyma

A Caregiver's Story: MDS Diagnosis Changes their Lives

I know my fiancé well.  Even though he seemed to be healthy and his job kept him active, I knew it had been a long time since he had a medical physical, so I pushed him into an appointment. Without symptoms, the doctor suggested routine blood work as a part of the physical.  We were surprised that all his counts were low.  The doctor decided to check again in a month, so I made sure that his diet was healthier and that he took vitamins, hoping that would correct any problem.   Because I’m a...

Jane Biehl, Ph.D.

MY 12-YEAR BATTLE WITH MDS - By Jane Biehl PhD

I had an article published in 2017 by AAMDSIF and was asked to update everyone.  I will briefly reiterate the first part of my journey and then move forward!      I was originally diagnosed in 2010 with Myelodysplastic Syndrome by an insensitive oncologist, who told me that I had this disease and the average life span for this type was 104 months. I had not even asked how long I would live. She was devoid of emotion and nasty.   The room spun wildly as I grasped my friend’s hand. I couldn’t...

Mark

Mark lives symptom-free with MDS, but it's still "like an albatross"

Mark had no symptoms common to bone marrow failure patients. Not one. But an MRI for back pain revealed some unusual markers.  A bone scan and blood work still didn’t reveal an explanation.  Thankfully, his internal medicine physician ordered a bone marrow biopsy.  After waiting and waiting for the results, Mark received the diagnosis: Myelodysplastic Syndromes with 5q deletion. Later testing showed the JAK2 mutation, which he found even more alarming. Mark remembers the call from his...

Derek Fakehany

Two transplants mean new life for Derek: a story of high-risk MDS, perseverance, and advocacy

Derek was turning 45 and had noticed occasional swelling in his legs. Due to a family history of heart disease, his wife, Amy, was uneasy, noticing this symptom. She encouraged Derek to see his doctor for more thorough testing. At the primary care physician’s office, Derek had a Complete Blood Count. The blood test showed he was anemic, but nothing else unusual. Derek’s family doctor referred him to a hematologist to look into his anemia. At the first appointment, the hematologist noted anemia...

Karen Woys

High Hopes Fulfilled for MDS Survivor

I was diagnosed with MDS (RAEB-2 - Refractory Anemia with Excess Blasts) in January 2010 at the age of 55. This came after routine blood work and a subsequent bone marrow biopsy revealed dangerously low blood counts and cellular abnormalities. What a terrible shock for both my husband, Michael, and me! I’ve always been incredibly healthy and come from a long line of healthy, long-lived individuals. I didn't feel sick, so how was it possible to have a rare, life-threatening illness? Sure, I was...

Barry Parnas

MDS-My Story...so Far! By Barry Parnas

MDS - My Story . . . so far Early in 2010, thousands of us had just been laid off and I had decided to start an RN nursing career. I was 47 years old, but in May I was diagnosed with MDS after a routine physical. I had a follow-up appointment with a hematologist oncologist over the summer, and a bone marrow biopsy in August, which was definitive for MDS-RCMD (Refractory cytopenia with multilineage dysplasia).  I had a consultation with the bone marrow transplant (BMT) director at Washington...

Sherry Pratt

Patient Trusts Her Instincts in Finding the Right Treatment

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 Anemia with Ringed Sideroblasts, (RARS) subtype.  I was scared, mad, confused, and in denial. When I was first diagnosed in...