By Michael Lane, Patient/Advocate
Amyloidosis Army
Amyloidosis is a rare heart disease that predominantly affects older African American individuals, often leading to heart failure. In the black community, 1 in 25 people carry the TTR V122I mutation (transthyretin cardiac amyloidosis) that leads to a rare, incurable, fatal heart disease.
In 2018 I was diagnosed with the rare European mutation T60A, which leads to the same disease, cardiac amyloidosis, for which there were no approved treatments. My doctor told me I had two years—maybe four—to live. I immediately embarked on a journey to learn everything I could about this disease that was killing me. Since then, some treatments have been approved by the FDA that can extend and improve the lives of those of us who have this disease. I have been fortunate enough to benefit from these treatments and continue to work to bring awareness to this greatly misdiagnosed and underdiagnosed disease.
Amyloidosis is overlooked by most doctors. Some are just not aware of it, so they are not looking for it. If they don’t look for it, they won’t find it. As a result, the symptoms experienced by many people who have the disease are considered to be from other causes. Without proper screening, diagnosis and treatment, it is a debilitating and fatal disease.
Some of the Signs and Symptoms to Watch for:
- Bilateral carpal tunnel syndrome
- Fatigue and weakness
- Swelling in the legs and ankles
- Shortness of breath
- Numbness or tingling in the hands and feet
- Irregular heartbeat
- Frothy urine
- Unintentional weight loss
- Tongue enlargement
- Easy bruising, particularly around the eyes
- Difficulty swallowing
If you are experiencing any symptoms, ask your doctor for a free screening, which is performed by swabbing your mouth or collecting saliva in a test tube. I have attended many medical conferences and symposiums on amyloidosis and have heard the best doctors and researchers in the world talk about how the black population has this most prevalent mutation, but no one ever had a real plan to address it. That was hard to accept.
I started Amyloidosis Army in 2024 to increase awareness about V122I in the Kansas City region. Recently Art Still, a former player for the Kansas City Chiefs (#67), who also has been diagnosed with amyloidosis, joined us.
We host free presentations to churches and civic groups to increase awareness. We feature top cardiologists who share vital information about amyloidosis.
