Long-term survivor and dedicated volunteer | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

Long-term survivor and dedicated volunteer

2015 will mark the 17th anniversary of my victory over myelodysplastic syndrome (MDS).  An unrelated-donor bone marrow transplant saved my life and cured me of the disease in 1998.

I was originally diagnosed with aplastic anemia, in 1996, when a routine checkup showed that my blood counts were at life-threateningly low levels.  I was treated with the immunosuppressant called ATG and experienced some improvement, but could never get back to normal blood counts.  Eventually I was found to have chromosomal abnormalities and I was re-diagnosed with MDS at age 43.

In 1998 my only options were supportive care, which meant waiting for my MDS to become leukemia, or transplant. Statistics were hard to come by but the odds seemed to be only 60-40 that I’d survive to see the year 2000. Because I had a young family and an available donor, my husband Neil and I chose the transplant and the chance for a cure, despite the risks. I spent 44 days in the hospital and months afterwards at home, but I gradually recovered my health and my life. I celebrated the year 2000 with a renewed appreciation of how important our health and our families are. It felt like the pinnacle of victory when in 2005 Neil and I spent a month in Japan to celebrate our 25th anniversary, a trip we had dreamed of for years but after my diagnosis doubted we’d ever get to take.

Throughout my medical journey I was cared for and supported by both my real and online families and friends, the doctors and nurses at the City of Hope in California, and the wonderful staff of the Aplastic Anemia and MDS International Foundation (AAMDSIF), who provided us with information and resources and connected us with other patients and their families who knew exactly what we were going through.

Since my recovery, I’ve tried to give something back to those who helped save my life.  Every year I help decorate the City of Hope’s float for the Rose Parade, a small way to show my appreciation.  I’ve done what I could to help AAMDSIF, serving on its Executive Board for 5 years, volunteering at patient conferences, and organizing the annual Los Angeles Hope, Steps & a Cure fundraising and awareness walk.

From 1996 to 2006, I participated in the AA-MDS-TALK listserv, a patient-to-patient email support group, and helped run it with Vince Wessling, an aplastic anemia caregiver.  In 2006, Neil, Vince and I created the Marrowforums.com website, where patients and their family members support each other by sharing information and stories and answering each other’s questions based on personal experiences.  Neil and I continue to manage Marrowforums on a daily basis.

I’ve seen many changes since my original diagnosis and treatment.  New drugs and new treatment protocols have been developed that give MDS patients more choices with fewer risks.  Transplant care has improved too, so patients can return to health sooner and more easily than I did.  Mini-transplants have increased the upper age limit for transplant.  The bone marrow registries in the U.S. and other countries have continued to grow.  The influence and reach of AAMDSIF has grown as well, as it continues to provide families with the latest information, support medical research, hold Patient and Family Conferences where medical professionals speak directly with patients, and advocate for patients and families everywhere who are facing bone marrow failure diseases.  I’m proud to be associated with their efforts.

Why should we help others when we have our own lives to tend to?  My bone marrow donor, a wonderful woman from North Carolina, answered that question in 1998.  When she was asked why she donated marrow to a stranger, she said, “It was the right thing to do. If people like me don’t help people like Ruth, who’s going to do it?”  I feel the same way about helping those who are struggling as I once struggled.  If people like me don’t help, who’s going to do it?

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