Living the Survivor's Life
Bunny has PNH, but is living the survivor's life! Joe, her dear husband, has been her caregiver since the illness began. Listen to how they are sharing the journey here.
How your health care team can become your partner
Senior Director of Health Professional Programs, Alice Houk, describes how your health care team can become your Partner toward health in this interview.
Leigh Clark, Patient Educator, shares her insight into the bone marrow failure disease journey
This is the first episode of our new podcast. Leigh Clark, Patient Educator, describes the bone marrow failure journey and how AAMDSIF can help!
Orlando
Thank you for attending the 2017 Patient and Family Conference in Orlando, FL.
Event Date:
Sat, 11/04/2017 - 8:00am (EDT)
Conference Materials:
Bone Marrow Disease(s):
Conference Event Type:
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:
Updates from John and Isabella!
Person's Name:
John Vasquez, Part 2
Part 1
Bone Marrow Disease(s):
Content source:
Kansas City
Thank you for attending the 2017 Patient and Family Conference in Kansas City, MO.
Event Date:
Sat, 10/14/2017 - 7:30am (EDT)
Conference Materials:
Bone Marrow Disease(s):
Conference Event Type:
Newark
Thank you for attending the 2017 Patient and Family Conference in Newark, NJ.
Event Date:
Sat, 09/16/2017 - 8:00am (EDT)
Conference Materials:
Bone Marrow Disease(s):
Conference Event Type:
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:
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: