Apr. 17, 2018
TOPIC: Patient Stories
Posted by Lisa Sencen
In this guest blog post submitted by Mackenzie Boedicker and her mother, Deb, we share the story of one woman’s mission to alleviate the struggles for those who live with amyloidosis. Mackenzie was diagnosed in 2017 and is doing well as a full-time research assistance and founder of a non-profit organization, Mackenzie’s Mission.
In April of 2017, I was diagnosed at the age of 23 with Amyloidosis. I had noticed a lump in the back of my throat that continually increased in size. After several visits with different ENT physicians, I had the lump biopsied, and the results indicated the tissue had characteristics of amyloid. I was referred to a hematologist in Boston who suggested a bone marrow biopsy to confirm the diagnosis. The results confirmed the suspicion. For a second opinion, I met with an Amyloidosis specialist at the Mayo Clinic in Rochester, MN, widely recognized as a center of excellence for Amyloidosis. The specialist was completely baffled by my case, saying he’d never seen anything like my presentation. The “typical” Amyloidosis patient is a 50 to 80-year-old male with organ involvement, whereas I was a 23-year-old female with no organ involvement whatsoever, making my case extremely unique.
My first trip to the Mayo Clinic in May of 2017 involved a battery of tests to re-confirm the diagnosis. Once it was confirmed a second time, the doctor recommended I undergo an Autologous Stem Cell Transplant in hopes of getting rid of the disease. He believed that due to my age, lack of organ involvement, and early diagnosis, the treatment would be successful.
Two months later, I returned to the Mayo Clinic for my treatment. I spent a total of five weeks in Rochester undergoing treatment, which included IVF, stem cell transplant, and chemotherapy. One of those weeks was spent in the hospital due to severe Esophagitis. During my exit interview post-transplant (Day 18), the doctor informed her that I had achieved a complete response to therapy and that there was no evidence of disease anywhere in my body!
I am currently Day 100+ post-transplant and doing exceedingly well. I reside in Boston and am a full-time research assistant at Harvard Medical School in the Brugge breast cancer lab while preparing to apply to medical school.
Why Mackenzie’s Mission
As a result of my experiences, Mackenzie’s Mission was created in August 2017 to spread awareness about the importance of early detection and to raise money to support Amyloidosis research at the Mayo Clinic. It was because of my early detection that complete remission was possible. It is my hope that by creating this foundation, increased awareness can lead to people getting diagnosed years and even decades before organ involvement becomes life-threatening, thus greatly improving the chances of successful treatment. The entirety of every donation will be used to support the development of early detection and innovative treatment methods that are so desperately needed for others to live a longer, better quality of life.
Amyloidosis is a rare disorder in which an abnormal protein, amyloid, is produced by plasma cells in the bone marrow. This protein is misfolded and thus the body is unable to properly discard it. Instead of the abnormal protein being removed from the body, the protein can deposit in any tissue or organ. Amyloidosis affects each person differently, but frequently attacks the heart, kidneys, liver, spleen, nervous system, and digestive tract. Severe amyloidosis can result in life-threatening damage to these organs, or even failure.