By Laurice Levine
As I reflect on my life with transfusion-dependent beta-thalassemia (thal), it is easy to become overwhelmed. In short, thalassemia is an inherited blood disorder where the body is unable to produce hemoglobin, which causes severe anemia and endless complications. In 1973, when I was diagnosed at 14 months of age, my parents were told I would not survive past age 13. I am now 51 years old.
I’ve had a lifetime of challenges: early physical degradation, broken family dynamics, loss of dear friends and fellow patients, discrimination, and endless medical appointments and treatments. I am thankful for the medical providers who have worked so hard on my behalf. In overcoming so many obstacles, I have learned perseverance and compassion, and I have developed a passion for life familiar only to someone who has faced death multiple times.
The highs are incredibly high. The lows are rock-bottom low. Achievements that came with great struggle, such as earning a master’s degree, getting married, and having a child, also bring extreme joy and satisfaction. At nine, I survived congestive heart failure. At 10, I had a splenectomy. At 13, my tonsils and adenoids were removed. At 17, I broke my back and both feet in an accident unrelated to thalassemia. At 18, my doctor said I was a miracle, alive without treatment despite a hemoglobin of 6.9 (normal is 12 to 14 for women). At 22, I had my gallbladder removed. At 25, after another episode of congestive heart failure, I was given five years to live unless I “handled my thalassemia properly.” What? I wasn’t handling it? The doctors had never given me any treatment options! The only choice was to commence blood transfusions, so I did.
Right after my first transfusion, I moved away to attend graduate school on a full scholarship. A doctor in my new location helped me get on my feet medically. I was his first and only thal patient, but he was dedicated, smart, and willing to learn. I began chelating. This involved poking myself in the abdomen or legs with a needle attached to a pump. The pump infuses a medication that rids my body of excess iron accumulated from the blood transfusions. I continue this regimen now, using the pump 15 to 24 hours daily, with additional oral chelators.
Today, I receive two units of blood every other week—I’ve had 615 blood transfusions, or about 1,230 units of blood. Along with the transfusions and surgeries, I’ve had a cardiac blood clot, osteoporosis, more broken bones, endocrine issues, and GI problems.
This past April, I underwent a spinal reconstruction and fusion from my thoracic to my pelvis—it was the hardest medical procedure I have ever undergone. Two weeks ago, I was hospitalized for eight days with a life-threatening staph infection in my blood, and I added a few new procedures to my checklist.
I average 40 hours a week preparing and administering my medications, getting treatment, juggling doctor appointments, and battling pharmacies and my insurance company. I have participated in countless clinical trials, as well, in gratitude to patients who made my treatment possible, and in honor of the next generation with thalassemia.
Outside of my medical regime, I work full-time running a medical consulting business, I am a wife, and I am a mother to an active seven-year-old boy. Parenting is the most precious part of my life. I juggle medical tasks and my work schedule so I can be his primary caregiver—taking him to his after-school activities, helping with homework, and going on adventures. I volunteer in his classroom twice a week and count my blessings that I am able to do this.
Sadly, the pokes, surgeries, and transfusions are not the real obstacles. Rather, the greatest hurdle is the financial impact this disease has on my life. Last year alone, my out-of-pocket expenses were $50,000, which is a huge burden. The sacrifices my family has to make, especially during trying times, is heartbreaking.
Finally, the attitude of others and society at large is hard to cope with—the majority has no room for the vulnerable, as was made plain by COVID. For me, this includes siblings who I have been isolated from my entire life because I was “the sick one.” However, their apathy and disdain pushed me even harder to succeed. I felt victorious every time I achieved a milestone that they could not, despite their good health.
Some days, I feel like I am slogging through the mud, but I am motivated to be my best self in honor of my blood donors—and most of all, for my family. Blood donors give me life so I can live mine to the fullest. Consequently, I have tried to use my experiences for the greater good. Early in my career, I built an outreach program at a major medical center for thalassemia. I wanted to make life easier for patients and families so that no one would have to experience the loneliness and isolation I felt growing up. Speaking to parents and patients was my greatest honor—I tried to model adherence while giving hope for a fulfilling life.
My struggles have also taught me that advocacy is the backbone of medical advancement. Raising awareness and educating the community are the first steps of progress. On a personal level, giving back is integral to my survival.
Patients cannot rely on others to speak up for them—we must educate ourselves and others, speak up, and advocate for new treatment options and global healthcare equality. I can only hope that my experiences and advocacy efforts have helped to assure a better future for the next generation of people living with thalassemia.
Laurice Levine is a professional advocate dedicated to helping people with beta-thalassemia manage all aspects of their disease. She worked for 17 years as a thalassemia outreach coordinator/child-life specialist at UCSF Benioff Children’s Hospital in Oakland, California, and is currently a paid consultant for companies developing new therapies for beta-thalassemia.
Thank you, Laurice, for sharing your story of courage and perseverance with our readers.
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