Patient Stories

I am grateful beyond measure! It was Memorial Day weekend 2023 and our annual family vacation in Myrtle Beach, SC. The perfect time to hit the beach, play in the waves and pools, build sandcastles, and reunite with my children, their spouses, and my grandchildren. I wasn’t feeling 100%, but thought the fatigue was due to seasonal allergies. The shortness...

My name is Shalise Gorrell, and nothing could have prepared me for this diagnosis or the journey that was to come. I was only twenty-six years old when I received my diagnosis, but I had endured well over two years of gradual symptoms leading up to that moment. My symptoms started off small, with some swelling in the legs, and...

Back in 2015, I went to see my Primary Care Manager several times because of fatigue and feeling feverish (when I didn’t have a fever). My muscles and bones were hurting. I was also retaining water, my feet and ankles were huge. I switched PCM’s around September of 2015 and told her what was going on, how I felt tired...

In May of 2012, my father received a diagnosis that no one saw coming: Heavy Chain Amyloidosis. He had been sick for years, decades even. He had atherosclerotic plaques throughout his heart and carotid arteries and suffered GI symptoms that would cause severe bleeding and nausea. I remember my father being sick for most of my life, but despite his...

I was diagnosed with Carpal Tunnel Syndrome and had CTS surgery on both my left and right wrists in late 2017. I had my annual physical in January 2018, Blood Testing (TSH) found hypothyroidism (Hashimoto’s) and also found an M-Spike (High Protein Level) and I became extremely fatigued over the next 6-8 months. I then started having what felt like...

Lew Hill was a loving husband, amazing father, dependable son, marvelous big brother, outstanding grandfather, and a phenomenal college basketball coach. Growing up in Mount Vernon, New York, Lew was intrigued by the game of basketball. He could be found playing at a park or the local Boys and Girls club with his friends. Lew always knew basketball would be...

My older sister, Barbara Kaplan, started having shortness of breath in October of 2019. She went to her internist in Miami, Florida, and a chest x-ray which showed fluid in her lungs. Her internist immediately referred her to a cardiologist who suspected amyloidosis. She was diagnosed a few days later and was started on Vyndamax shortly after. Her 3 siblings...

In 2018, I had what I thought was a particularly bad case of bronchitis. As I regularly get sick in the winter, I didn’t think too much about it, except I was unusually weak, and tired. I also started sleeping in a chair, as I couldn’t breathe lying down. When I finally saw my Internist after 3 months, she noted...

I am 44 years old and 4th generation living with hATTR. My dad passed away at 53 and my grandpa at 61. I’ve been around hATTR as long as I can remember. When I was little (5-6 years old), our family was giving blood samples to IU Med Center for research. It came into our family through my paternal Great-Grandmother....

I live in Los Angeles in California but, as a performer, have had the good fortune to travel and work internationally for the past 50 or so years. My amyloidosis announced its unwelcome arrival around 2008, if not a little before, when I was in my late 60s, with the manifestation of persistent dark circles around my eyes. When these...

There is no greater reminder that we should cherish moments than nearly dying. A close call with death ensures that we become much more aware of what we have, what we need, and what we might miss. We were extremely aware this past July, that this year marked 20 years since we wallowed in fear, self pity and continual illness....

Back in 2014 I was working full time, went to the gym, mowed my mom’s yard, and my yard. I did all sorts of things. I was 56 years old. I started feeling short of breath and was very tired. I went to my primary care physician, and she said I just had a bug. It went on and I...

Where will this ATTRwt amyloidosis journey take me? I like to travel; however, this trip was not planned or wanted! I wonder a lot about the journey I am starting, so far it has been OK. In 2017 I had an angiogram that my cardiologist described as being a little weird and she said she would keep watching it. Yearly...

In July of 2013, I was diagnosed by a kidney biopsy. I had gone to the doctor with just one symptom of swollen ankles. I have AL Amyloidosis and we believe the only place I have it is in my kidneys. I work with a local oncologist in Pleasant Hill, CA, and he consults with the Amyloid team at Stanford....

In February 2019, I was diagnosed with AL amyloidosis. My annual mammogram results came back showing a lot of calcification. A biopsy was done on both breasts. The doctor said “Great news no cancer”. But when I read the report for myself, it said that I had amyloid tumors in both breasts with lymphoplasmacytic infiltrates. I went to my PCP...

Retired Marine Corps Colonel & Heart Patient For U.S. Marine Corps Colonel Gary Supnick (retired), the path to being diagnosed with transthyretin (TTR) cardiac amyloidosis was far from straight. Over a period of nearly five years, starting when his primary care doctor heard something “not quite right,” Col. Supnick underwent more tests than he can recall only to be told...

My mom, aunt and grandmother all died of Hereditary Amyloidosis. I was about 10 years old when I was first exposed to the devastating effects of the disease and it lived with my family and I until I was 17. Time passed after my mom died and at the age of 26, I started to experience some numbing sensations in...

I am Len Strickland and I was diagnosed with Hereditary Amyloidosis (ATTR) with a variant of Val122ile. There are over 100 different variants of ATTR based on culture and ethnicity. I learned of my affliction at the Mayo Clinic in Rochester, Minnesota on March 29 of 2007. Hereditary Amyloidosis (ATTR and non-TTR) is a rare type of Amyloidosis that is...

from the Cleveland Clinic website On the short helicopter ride to Cleveland Clinic from the Medina, Ohio, school where 800 people witnessed his sudden cardiac arrest, Dr. Stephen Sroka – on the brink of death — had an epiphany. “I was barely conscious, but kept thinking – I’ve got it all wrong,” recalls Stephen, 76, a motivational speaker and adjunct...

Even with the education and experience Kevin Anderson had as a practicing physician, he couldn’t understand what was wrong with him. By 2008, what he did know was that the stairs he used everyday as a measure of his fitness had become, inexplicably, more and more of a challenge in the previous two years. He had seen a cardiologist who...

I am a 47-year-old daughter, wife (proudly of 20 years), mother and friend. At the end of 2017, I was having what I thought was an asthmatic flare up and couldn’t sleep at night without a constant cough. When this continued during the daytime and many attempts of medicines and breathing treatments, I just knew something else was going on....

My name is Dr. Leslie Schumacher-McKee and I am 39 years old. After the birth of my second son 3 ½ years ago, I started experiencing increased bruising, muscle (particularly calf) pain, abdominal pain, and lethargy. In August of 2011, after 5 months of numerous appointments with multiple doctors and physical therapy (mostly attributing my symptoms to being a working...

My name is Marion Farina. For most of my life I’ve taken good care of myself, eating well and getting a lot of exercise. I considered myself to be a healthy woman, except for having osteoporosis. In August of 2009 at the age of 62, I went for a follow-up visit to my osteoporosis specialist at St. Barnabus Ambulatory Care...

I have always been the kind of person who follows the rules. I was always healthy, ate well, exercised, and had a lot of energy. So when I was diagnosed with amyloidosis and myeloma, people asked, “How can this happen to you when you have done everything right?” I admit that I thought the same thing but as I learned...

Edgar Baxton, 65, is a health teacher at the Fort Dodge Middle School in Fort Dodge, Iowa. He also coaches junior varsity volleyball at Fort Dodge Senior High. He was diagnosed with amyloidosis in 2015 and needed a heart and liver transplant to save him. What transpired through his medical journey was a true out-of-body experience that changed his life...

In April of 2017, I was diagnosed at the age of 23 with AL amyloidosis. I noticed a lump in the back of my throat that had been increasing in size. I saw an ENT who incorrectly diagnosed the lump as seasonal allergies. A second ENT eventually did a biopsy of the lump and the results indicated that the tissue...

I live in Toronto, Ontario and have AL amyloidosis with multiple organ involvement. I am currently in a clinical trial and I’m happy to say that I’m doing well. I am one of only 260 people worldwide receiving this treatment; which I believe has given me my life back. I want my story to bring some much needed awareness to...

Written by Jaime, Wife and Caregiver I am writing to share a little about the journey my husband and I have been on since his diagnosis in October 2013. Aubrey was diagnosed with hATTR. We had prayed that this disease that claimed the lives of his grandmother, father, brother, aunties, uncles and cousins would somehow skip him, but that was...

My name is Jason Conway and I am a husband, father, teacher, and coach. I am 48 years old and have lived a pretty normal, healthy life. I have always been active and have taken care of myself. I am also an amyloidosis patient. My life changed drastically in January of 2015. I was with my daughter at my son’s...

In 1986, I gave birth to my 30-week old son. It was determined, he was born with Neonatal Lupus with Complete Heart Block. Sadly, he died at 3 weeks old from V-fib. I was left with a broken heart and a diagnosis of Sjögren’s Syndrome and Systemic Lupus. I was not sure what my future would look like and I...

The Cardiac Amyloidosis Program at Brigham and Women’s Hospital’s (BWH) research patient, seen by Sharmila Dorbala, MD, FASNC, with AL amyloidosis and cardiac involvement discusses diagnosis and treatment.

Written by Debra Payne, Wife and Caregiver Valentine’s Day 2013, we received a call from my husband’s nephrologist. A week earlier we had no idea what a nephrologist was. And doctors don’t typically call with biopsy results the next day. Something wasn’t right. It began when our new family doctor ran a comprehensive series of tests on all his new...

Three years ago a dream came true. After years of trying, l was blessed to give birth to my son. Shortly after giving birth, I began to experience a series of strange health issues ranging from severe joint pain, severe fatigue, digestive disorders, rashes and general malaise. I consulted a Dermatologist late 2016 for hair loss, later determined to be...