The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell production is so poor in the bone marrow, the body tries to compensate by moving the process over to the spleen. For Bill, the news that his spleen had already enlarged to twice its normal size was alarming, to say the least.
Bill’s family and friends had trouble accepting that anything was wrong with him since, on the outside, he looked perfectly healthy. However, on the inside, his body was fighting a war.
For most people with rare diseases, there is no medication approved specifically for their disease. However, in 2011 the U.S. Food and Drug Administration (FDA) approved a drug called Jakafi for people with MF, and Bill says that his symptoms improved when he began taking this medication.
In addition to being treated with medication, Bill also went through a blood transfusion and stem cell transplant. Through his local doctor, Bill found a hospital – Rush University Medical Center in Chicago – that could treat his rare blood disease. Rush provided a welcoming and uplifting environment during a tough time in Bill’s life.
After one blood transfusion, Bill was told he would need a stem cell transplant to survive. Adopted at birth and with no knowledge of biological siblings, Bill relied on strangers in the bone marrow registry. In July 2012, just a few weeks after joining the registry, Bill got an unexpected call to inform him that he had six potential matches. Knowing that some people lose their lives waiting for a donor, Bill was taken aback by the number of matches. The ultimate donor was a 10/10 match, and Bill received his new stem cells from a man in Europe.
After months of improved blood counts, a turn for the worse came in early 2013. The number of normal stem cells in Bill’s bone marrow had decreased dramatically. Bill found himself back in the hospital with severe and debilitating symptoms. It was during this tough time that Bill relied on his positive and strong spirit to lift him out of this hole. Eventually, Bill’s blood counts returned to normal levels, and he believes his positive spirit helped him get through this difficult time.
Today, Bill is feeling well and focused on helping other MF patients through the MPN Research Foundation. Having been mentored by a woman from Miami during his transplant, Bill is now returning the favor by mentoring others going through treatment.
Making connections and reaching out to the community is not new to Bill, who was a volunteer fireman before the MF diagnosis. With the help of the MPN Research Foundation, he has traveled outside of his comfort zone to advocate. Once the quiet guy standing in the back of the room, Bill is now the man upfront delivering inspiration through his story. He can see advocacy being a part of his future career path, and hopes to play a part in Blood Cancer Awareness Month this September.
Aileen Tobin is currently an intern with NORD’s communication’s team.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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