A genetic blood disorder with very real and painful consequences, sickle cell anemia is no joke. Impacting millions across the globe, this condition is actually a result of genetics. When your hemoglobin gene is mutated, the shape of your blood cells may change.
That shape – a sickle – is where the disease gets its name.
But did you know that these abnormally shaped red blood cells can cause all kinds of unexpected problems?
Turns out, there’s a lot to sickle cell anemia beyond the surface. Here are six life-saving facts you need to know, whether sufferer, caretaker, or anyone else.
Did you know newborns can be screened for the disease? According to the Centers for Disease Control and Prevention (CDC), these screening programs are crucial for initial diagnosis. They’re also invaluable when it comes to proper, effective treatment.
The main reason for this is that early screening may actually detect the disease before symptoms appear.
It’s especially important for parents who may be ‘carriers’ and can pass on the gene to their babies. If you have a family history, definitely look into genetic counseling. Once detected, checking up with a hematologist can ensure you manage the condition as best as possible.
With sickle cell, a ‘pain crisis’ is an episode of intense pain caused by blockages of blood. This can cause reduced oxygen to crucial tissues, organs, and other parts of the body. As a result, severe and lasting damage may occur.
Fortunately, proper management can prevent hospitalization and greatly reduce serious impacts. According to the American Journal of Hematology, proactive pain management has significant benefits.
Staying hydrated is the first line of defense. After that, use prescribed pain meds, and don’t forget non-drug approaches such as heat/cold therapy, deep breathing, regular acupuncture, and massage therapy. These can greatly reduce the likelihood of hospitalization.
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While those familiar with the disease already know this, did you realize that such blockages can be fatal? In rare cases, deadly strokes, acute chest syndrome, and spleen rupturing may all occur. If not treated immediately, they may result in serious damage or worse.
This is why regular doctor visits are so important. You’ll learn how to manage the condition through stress management and avoidance of extreme temperature environments. Treatments like hydroxyurea and nonsteroidal anti-inflammatory drugs (NSAIDs) also work.
Balanced eating, consistent moderate activity, and regular blood transfusions can all go a long way too.
Speaking of blood transfusions, they can literally be a lifesaver.
A critical treatment component, they are one of the best ways to prevent strokes and severe anemia. This is because blood transfusions help ensure normal red blood cells are circulating in your system, which is crucial for oxygen supply.
Just be sure to work closely with a hematologist, as too much transfusing can lead to excess iron, which is a serious problem on its own!
RELATED: SCD Pain Crisis? Here’s What to Do
Over time, sickle cell anemia can lead to catastrophic organ damage if left untreated. Your kidneys, lungs, spleen, and liver are the major organs most affected. Fortunately, there are many ways to prevent this.
The first thing to do is regularly get your organs checked.
This can be done with routine blood tests, imaging, and the use of prescribed drugs. Another thing you can do is adjust your daily habits. It’s all about reducing stress, both physical and mental.
Check your blood pressure regularly, avoid large crowds if you’re immunocompromised, and eat as many whole, organic foods as possible. Talk to your healthcare team about a comprehensive approach that fits your lifestyle.
Last but not least is gene therapy.
While still largely in the clinical stages, various treatments show great promise. From gene editing like CRISPR-Cas9 to lentiviral gene therapy, base editing, HSC transplantation, and more, the possibilities are increasing all the time.
If you haven’t heard of these, you’re not alone. Many are still being developed, so do your own research and ask your doctors about the latest developments. Keeping tabs on new advances can help you be on the cutting edge when such amazing therapies are finally available.
Other than that, managing sickle cell is all about being proactive.
Although the disease is considered chronic, many of today’s therapies, drugs, and lifestyle changes can greatly reduce symptoms. Don’t forget this. If you ever feel like you’re losing hope, don’t let it get to you.
There are treatments for people just like you, and for those who have it even worse. In fact, many sufferers lead relatively normal and fulfilling lives, just like anyone else!
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