Changing the Sickle Cell Trait Paradigm
We all have heard that sickle cell trait is benign and asymptomatic.1
Sickle cell trait
Sickle cell trait carriers have both normal and abnormal hemoglobin (HbSA) genes, which may result in altered red blood cells. These red blood cells travel your entire body carrying fresh oxygen to your organs. The protein called hemoglobin is hitching a ride so-to-speak, inside these cells. These red blood cells also assist in the removal of carbon dioxide. After 120 days your protein needs another ride because the red blood cells have to be replaced by your bone marrow. Imagine having to buy another vehicle after every 120 days.
Risks of sickle cell trait
If you're interested in reading up on sickle cell trait just be aware and read both sides. There are multiple documents out there on the internet that co-sign the benignity of sickle cell trait but what you probably don’t know is the other side of the story and the deaths that have been attributed to sickle cell trait.
For young African Americans in military basic training and sports, sickle cell trait is the leading cause of sudden death. 2 It is also important to know that some states don’t list sickle cell trait as a cause of death, so mortality due to sickle cell trait could be higher, in my opinion. The states with the highest sickle cell trait mortality rates are Colorado (0.005), Alaska (0.0014), and Mississippi (0.001).2
When I came into the sickle cell trait community I wanted to find more people like me and to collaborate on each other’s experiences. We became the witnesses to what we deal with, extreme fatigue and unexplained chronic pain. I was diagnosed with everything from sickle cell disease and sickle-cell trait to sickle-cell disease with beta-thalassemia to recently, sickle cell trait with alpha-thalassemia trait mycrotic.
There is controversy as to whether sickle cell trait should be considered as a benign carrier or as an intermediate disease phenotype.3
People with sickle cell trait are also being hit hard by COVID-19. Mayowa Azeez Osundiji of Toronto’s SickKids pediatric hospital said, “it is important not to overlook the potential increased risk to patients who carry the trait.” In SCT, pathogenesis causing spleen infarction and other complications can be triggered by factors such as dehydration, increased viscosity, high altitude, and temperature changes.4
My back surgery
My last back surgery was in 2017 and I talked to the anesthesiologist about sickle cell trait. I was unconscious for 10 hours in the recovery room after surgery and I was eventually sent to the intensive care unit for kidney failure. I'm grateful I'm here to talk about this topic.
Some pathologists argue they see a dramatically increased number of sickled red blood cells in people whose deaths are linked to the trait.
Linking to comorbidities
Jon Thogmartin, the Pasco and Pinellas chief medical examiner, co-wrote a case report in the 2011 Journal of Forensic Sciences arguing sickle cell trait contributed to the death of 16 individuals. He argues there are a long list of signs besides warped blood cells that have helped him tie the deaths to sickle cell trait. 5
Renal medullary carcinoma
Renal medullary carcinoma is a rare kidney cancer that most commonly affects individuals with sickle cell trait. In one study, patients with renal medullary carcinoma were found to frequently participate in high-intensity exercises compared to a control group. A study with animal models found a similar result. These studies suggest that high-intensity exercise for those living with sickle cell trait is a risk factor for renal medullary carcinoma.'6
A silent killer
More and more medical experts consider sickle cell trait can be a silent killer. It is very important to know what’s in your genes for yourself and for your children. Learn the pertinent questions to ask your medical professional, be the witness to how your body feels, so you can have the important knowledge you need to adequately prevent or limit any episodes.
I thought Harvard University astronomer, Avi Loeb, said it best, “If you never give funding, search for something well enough,…you will never find it,” in other words, if sickle cell trait is never adequately funded on a National level, people will continue to die from rhbdomyolysis, excertional sickling, altitude complications, and renal medullary carcinoma because there's not enough funds to research sickle cell trait's impact.
The topic of sickle cell trait being benign or at least reclassified hasn't been heatily debated and it never dawns on us that Nature doesn't care what our opinion is. It will continue to do what's natural.
Do you consider yourself an advocate for sickle cell?