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I Was Alone With MDS Until I Connected With Others on Social Media

Person's Name: 
Jane Biehl, PhD

I sat quietly in the oncologist’s office. The doctor confirmed that my diagnosis was MDS and calmly stated, “The average survival term for your kind of MDS is 104 months.” I felt the room spin.

 

I never have been healthy, and suffered from upper respiratory infections all my life. Kidney and bladder infections plagued me all through college, and I have had a severe hearing loss since birth. I had been diagnosed in 1986 with an IGA deficiency, meaning that I had insufficient immunity although I was treated symptomatically with antibiotics when needed.

 

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

Confronting Challenges in Finding Matches for Multiracial Patients

Person's Name: 
Krissy Kobata

34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry.

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

As Patient Advocate, Emma Makes New Friends

Person's Name: 
Emma's Story, Part 2

When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

My Encounter with Aplastic Anemia

Person's Name: 
Jill Minden

In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed.

Bone Marrow Disease(s): 
Content source: 
eBulletin / eInsider (story of hope)

Alaskan Goes Home for Treatment and a Fresh Start

Person's Name: 
Shauna McMillan

I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus.  I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was diagnosed with lymphocytic colitis (also a rare disease for someone of my age).

Bone Marrow Disease(s): 
Content source: 
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