When I was 13 years old, I was diagnosed with severe aplastic anemia aplastic anemia: (ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most… . Doctors told my parents that I had six months to live unless I could find a matching stem cell donor. In Korea, where I’m originally from, much less was known about aplastic anemia than is the case today and the only treatment option given to patients was bone marrow transplant bone marrow transplant: A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due… .
Unfortunately, no potential donors were located and as a desperate measure, my family looked elsewhere for alternative treatment options. We were able to contact a renowned pediatrician in Japan, who suggested immunosuppressive therapy immunosuppressive therapy: Immunosuppressive drug therapy lowers your body's immune response. This prevents your immune system from attacking your bone marrow, allowing bone marrow stem cells to grow, which raises blood counts. For older patients with acquired aplastic anemia, immunosuppressive drug therapy is the… .
The next few days were like a vivid dream. I was transported to the airport by wheelchair (my blood counts were so low, I could have fainted at any moment). We made the two hour flight to Japan, and at the hospital I was assigned to an isolation room where everyone had to wear a mask, shoe covers, sterile gowns and gloves to visit.
I spent almost a full year living in the hospital in Kyoto, Japan. I didn’t know a word of Japanese, but people were very kind and it soon felt like home. My body responded well to the extensive treatment with horse ATG and cyclosporine cyclosporine: Cyclosporine is used along with antithymocyte globulin (ATG), another immunosuppressant, for treating aplastic anemia and some other forms of bone marrow failure. and upon leaving the hospital in 2001, my uncle, a doctor in Houston involved in cancer research, invited me to be his house guest.
My first months in the United States were only a little less isolated than in the Japanese hospital. But after a year of regular evaluation, my U.S. doctors concluded that my blood counts had stabilized and that I was free from aplastic anemia.
Over the next five or six years, I settled on a career path I wanted to explore. I’d always been interested in medicine and science, but my personal experience in fighting aplastic anemia certainly had an additional influence and impact on my decisions.
I now have a master’s degree in biomedical research, working at the Washington University School of Medicine in St. Louis, and am a candidate for a PhD degree in molecular biology. The lab I am working in for my thesis project studies acute myeloid leukemia acute myeloid leukemia: (uh-KYOOT my-uh-LOYD loo-KEE-mee-uh) A cancer of the blood cells. It happens when very young white blood cells (blasts) in the bone marrow fail to mature. The blast cells stay in the bone marrow and become to numerous. This slows production of red blood cells and platelets. Some cases of MDS become… (AML).
I am particularly interested in the gene that has an essential role in the hematopoietic differentiation pathway. This gene is often mutated in AML patient genomes, and this mutation mutation: Any change or alteration in a gene. A mutation may cause disease or may be a normal variation. Paroxysmal nocturnal hemoglobinuria (PNH) occurs because of a mutation in the PIG-A gene of a single stem cell in the bone marrow. is responsible for malignant reduction of blood lineages. Thus, understanding its molecular mechanism in healthy bone marrow bone marrow: The soft, spongy tissue inside most bones. Blood cells are formed in the bone marrow. function will allow better diagnosis and treatment option for patients with leukemia and bone marrow failure bone marrow failure: A condition that occurs when the bone marrow stops making enough healthy blood cells. The most common of these rare diseases are aplastic anemia, myelodysplastic syndromes (MDS) and paroxysmal nocturnal hemoglobinuria (PNH). Bone marrow failure can be acquired (begin any time in life) or can be… .
In 2015, I attended an AAMDSIF patient conference in Chicago because I was interested in the latest research and treatment options for aplastic anemia and MDS. After realizing there are over 100 aplastic anemia patients living in the Saint Louis area but there was no support group for those patients and their caregivers, I decided to initiate a support group as part of AAMDSIF’s Community Connections program.
It was not easy to spread the word to reach out to current aplastic anemia patients, but I got to know several medical scientists here at Washington University who are closely associated with AAMDSIF. I believe in the near future I will be able to organize meetings and be proactively involved in supporting aplastic anemia patients in the Saint Louis area.
Won invites St. Louis-area patients to contact him at wonkyunkoh710@gmail.com.
A Story of Hope Starts a Friendship and a New Career
Right after my story was originally published here in June of 2016, I received messages from a few people around the country telling me their own story and how my story had motivated them to continue their treatments and keep up the fight.
One of them was Kensley Davis, from California. He had an internship in a local government office, and he was interested in getting into law school. We talked on the phone a few times and found we had a number of things in common. We’re about the same age and he had been diagnosed with aplastic anemia about three years ago, (at a later age than I was). He is currently being evaluated every three months.
A few months later, he began applying to law schools, and I told him about the law program here at Washington University in St. Louis. One concern he had was that he wanted to be near medical professionals with solid experience in aplastic anemia, since he is still in treatment. I let him know that Washington University does have a qualified staff in this regard. I know this because I am working in blood cancer research myself.
Kensley applied and was accepted with full scholarship for three years. We were both thrilled by this news and also well aware of the fact that a former patient and current patient of a very rare disease will be in the same city and going to the same school. When he was invited to visit the campus, we finally met in person and I offered him my place to stay. He will start law school later this year and I strongly believe he is on the way to a rewarding career.