Finding a Fellow Patient Helps Rare Disease Patient Succeed
Diseases
Blood Disease, Heart Disease, Neurological Disease
Issues and Challenges
Gerald has encountered: Access to Expert Providers, Medical Records Access
My Story
I was diagnosed with AL (Amyloid light chain, or primary) Amyloidosis, a rare disease, in August 2023. My amyloidosis attacked my heart and there was evidence that malignant proteins were attaching to my heart muscle. Images showed unusual thickness in the muscles. I also had a cardiac MRI, lexiscan and bone marrow biopsy which confirmed I had the disease.
I knew nothing about the disease and no one in my family or friends had ever heard of it. I started to research on Google to learn as much as I could. I came across a series of videos made by Dan Lier on his journey through dealing with amyloidosis from 2017. It gave me hope by watching his videos and comparing each treatment session to my own. I started to learn more and more and asked my hematologist and cardiologist questions continuously.
I went through chemotherapy treatment from September 2023 through March of 2024. The treatment gave me side effects, some severe but I kept my hope up knowing what Dan Lier had gone through. I had lost my taste, couldn't sleep, had severe neuropathy (and still have it). My hematologist informed me in November 2023 that I have achieved "complete hematologic response" which means the malignant proteins from my bone marrow were no longer being produced and therefore, not continuing to attach to my organs (great news!).
Since November, my lab biomarkers have shown that I am still in blood remission. I am currently receiving monthly injections of antibody and see my hematologist monthly for lab work and the bio marker checks. I also see my cardiologist every 4 months. I am fortunate and blessed to have a great care team and doctors who are knowledgeable of this disease.
My Motivation and Inspiration
Dan Lier's journey through his treatment of amyloidosis from 2017 through 2020.
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