If you have a rare disease it’s likely you’ll encounter medical professionals who have never heard of your condition. Therefore, it’s a good idea to always be an active member of your health care team. Guest blogger Lori Grover shares seven important ways you can self-advocate.
Welcome to Mackenzie's Mission
Making a difference in the fight against Amyloidosis
My Story by Mackenzie Boedicker
My New Life Fighting Amyloidosis
In April of 2017, I was diagnosed with Amyloidosis, a rare and deadly bone marrow disorder that causes a buildup of abnormal protein in vital organs, eventually leading to organ failure. I successfully underwent treatment at the Mayo Clinic, and thanks in large part to my early diagnosis I am in complete remission.
In December 2018, I moved back to the Washington D.C. area after finishing a nearly two-year term as a research associate at Harvard Medical School. I learned an incredible amount about scientific research, its value, and the translation of the work back into the clinic. It has continued to energize me as I prepare to apply to medical school in the coming year. While in Northern Virginia, I shadow an orthopedic trauma surgeon at Inova Fairfax Hospital, where I’ve been shadowing on and off for over six years. In my spare time, I continue coaching youth hockey, something I have come to truly love, and volunteer as an assistant coach for a U14 girls ice hockey team. I continue to feel great and remain disease free.
Importantly, as a result of my experience and my desire to give back, I founded Mackenzie’s Mission to make a difference in the fight against Amyloidosis. I invite you to sign up below and follow my journey.
VOICES of Amyloidosis is a five-part campaign intended to give voice to those impacted by the disease. Each person in this video, which includes patients, caregivers, and expert doctors, have a story to tell in their own unedited words. You will feel their emotions and share their hope for the future.