The Story Of Sergeant Wheeler Samuel Small Jr.

In August 2004, Sgt. Small (Korean veteran, graduate of the first Black Class of Airborne Rangers, and Purple heart recipient) passed out, while he was working at a supply warehouse after being honorably discharged from the Military in 1954. His wife, Dr. Ernestine (Tina) Barnes-Small called the Paramedics and insisted they do not leave until he was seen by a heart specialist. Well, that led to a Quadruple Bypass. They figured it would all be well after that but a year or two later the passing out and (mostly) the shortness of breath continued. Besides this, he had been having nerve pains running up and down the inside of his left leg for over 35 years. He could remember numbness in his fingers, until (over time) he could not make a fist. His hands and feet were constantly cold. He figured this was due to his past, serving as an Airborne Ranger in Korea. Remembering that he had to sleep on the cold ground, after jumping out of planes. He just dealt with it.

Sgt. Small could recall multiple occasions when he had passed out and was taken to the emergency room, only to be given the diagnosis of "dehydration" every time. As time went on, his nerve pain worsened and he started having more significant spells. On February 2012, he missed an opportunity to go to Washington to meet the President, as he passed out in the kitchen and was taken to the emergency room. The on-call cardiologist asked him, "Why are you taking high blood pressure medication when you clearly do not have high blood pressure?". That led to extensive work in the next few months. However, it took a few more years to get to the correct diagnosis, but at least they were finally headed in the right direction.

His wife recalled that since their wedding in December 1989, Sgt. Small had passed out at least six times (that she knew about) before the big one happened in July 2017. When they arrived at the hospital, he was told that the left side of his heart was only performing at 19% to 21%. This led to amazing work in the next few months by several heart specialists to determine what was truly going on. Eventually, he was referred to Dr. Daniel Judge at MUSC who diagnosed him with hereditary Transthyretin Amyloidosis (hATTR). He was happy to be finally diagnosed, but he felt doomed after understanding that Amyloidosis had been there all along and missed for several years. At the time of his diagnosis, there were no approved medications to stop the amyloid build up in his heart. However, the MUSC Amyloidosis Center of Excellence was able to offer him treatment options, clinical trial participation, and symptomatic management until a medication was approved in 2018.

On December 16, 2020, Sgt. Wheeler Samuel Small, Jr. lost his fight against Cardiac Amyloidosis. He is survived by his wife of 30 years, Dr. Ernestine Barnes-Small - a strong, courageous, self-made leader in the African American community. From her early childhood, Dr. Barnes-Small had to overcome many obstacles but nothing compared to seeing her husband battle Amyloidosis.

Sgt. Small was only diagnosed three years prior to his death. Beating poverty was easy compared to seeing her husband's life drift away after years of symptoms that everyone missed. Today, she works towards creating awareness in the Black/Brown communities by challenging others: Do not be blinded! Do not ignore warnings about your health.

Know your body: Is something wrong?

Acknowledge warning signs - What could this be?

Confirm: I need answers!

ACT! When it comes to your health, your life:

Acknowledge (something is wrong)

Commit (be diligent in finding out what is wrong)

Test (get tested!)

In 2018, Dr. Judge established the Amyloidosis Center of Excellence at the Medical University of South Carolina. The Amyloidosis Center aims to expedite the diagnosis and provide multidisciplinary, patient-centered care for people with this condition.