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Complications Of Sickle Cell Disease May Often Include Mood Swings
I once thought I might be one of the few people living with sickle cell disease who do not experience mood swings. However, upon deeper self-reflection, I realized that I might very well be the queen of them. Mood swings are a common complication of sickle cell disease, and often, they're a justified response to the physical and emotional challenges patients face.
As much as I try to maintain my happiness, I occasionally succumb and deal with a variety of mood fluctuations. There are times when I simply don't feel like engaging with others, either in person or over the phone. I just want to be alone. Sometimes I appear lost or dismissive, and once in a blue moon, I might be frowning or seem sad. My sickle cell symptoms and complications usually trigger these mood changes and responses.
I experience both acute pain crises and chronic pain syndrome, which can manifest in different ways. When I'm in pain, I don't always react by shouting or crying; sometimes I do, but other times, I may show discomfort on my face. In those moments, my mood changes, and I may become withdrawn, uncommunicative, or want to be alone.
Chronic fatigue is another major complication I face with sickle cell disease. When fatigue overwhelms me, I become inactive with poor concentration. I struggle to pay attention, acknowledge people around me, and process what they say. My body and brain feel drained, craving urgent rest, hydration, or more focused treatment to function properly. If I don't rest on time, the fatigue usually triggers pain, making it even more challenging to manage my mood. It's essential to understand that my mood may not always be stable when I'm dealing with these issues.
Mood swings can also stem from depression and anxiety, which are psychosocial complications of sickle cell disease. The fear of potential problems can cause anxiety, while dealing with pain and symptoms can cause depression. The disease can significantly affect a patient's daily life, relationships, and aspirations, making mood fluctuations an unfortunate reality. Extended hospital stays and numerous medical or surgical procedures can deeply affect one's emotional state. For example, a sickle cell complication once kept me bedridden for over a year. That situation affected my mood in every way possible, but as a warrior, I overcame.
Furthermore, medications prescribed for managing sickle cell disease can greatly influence mood. For instance, opioids, which are often used to treat severe sickle cell crises, can affect one's mood greatly. They can make you sleepy, dull, overexcited, or euphoric.
Additionally, some sickle cell patients allow stigma and discrimination from society, health workers, and sometimes fellow sickle cell warriors to affect their mood. Although I don't let stigma and discrimination get to me, it's a common cause of mood swings for many patients.
It's crucial to recognize that many people judge sickle cell patients without understanding their circumstances, making comments such as "He can be snobbish," "She's usually moody," "He doesn't greet people sometimes," or "She's rude." We need to try to give patients grace and judge them less for their mood swings because we don't know what they are going through. A warrior who seems snobbish or dismissive may be grappling with intense pain or fatigue that is invisible to others. We must extend compassion and understanding to those battling sickle cell disease.
For friends and caregivers, it's essential to approach the situation with empathy rather than judgment. Take the time to learn about the patient's mood patterns and the underlying causes so that you can provide tailored support and care. Together, you can work toward enhancing their physical and mental health and bringing joy and positivity back into their life.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
6 LIFE-SAVING Facts About Sickle Cell Anemia
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.
1. Early Screening = VITALDid 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.
2. Managing 'Crises' Reduces HospitalizationWith 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.
RELATED: Sickle Cell Gene Therapy Clinical Trials: What Black People Should Know
3. It Can Block Blood FlowWhile 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.
4. Blood Transfusions Can Prevent DeathSpeaking 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
5. Organ Damage Can Be FatalOver 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.
6. New Gene Therapies Are AvailableLast 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!
Oldest Sickle Cell Disease Survivor In Florida Lives In The Quincy Neighborhood
Ashley EngleI'm your neighborhood reporter for Quincy and Havana. I joined ABC 27 as a reporter in June 2023. I was born and raised in Florida and grew up in Lake Placid, Florida.
BROADCAST TRANSCRIPT:
People with Sickle Cell Disease have a life expectancy more than 2 decades shorter than the general population. I'm Ashley Engle your Quincy Neighborhood reporter. One Gadsden County women beat those odds and is the oldest survivor with sickle cell disease in the state. I spent some time with her to see how she's using her story to encourage others.
"Sometimes, it's hard to give things to Jesus. I feel blessed and like I said its sad but good."
Meet Linda Mason. A mother, grandmother and great grandmother. But also, a sickle cell survivor.
"I can't even imagine what it was like for her and my father"
Linda tells me 75 years ago, her mother and father found out she had sickle cell disease.
A disease when red blood cells contort into a sickle shape. Like this shown on your screen.
"The more he pet me and bounced me the worst my screams got. And my daddy said no we need to take her to the hospital"
Sickle Cell Disease is hereditary. This is how its inherited...
If both parents have the sickle cell trait, there is a 50% chance that any child of theirs also will have the trait.
"We are so happy to have met such a person with a warm heart and knowing she's the eldest in the state."
Jenetta Nelson is with the Sickle Cell Foundation. She tells me Linda beat the survival odds. In fact, Linda is the oldest sickle cell survivor in the whole state.
"I hope it inspires others to take care of themselves, living with sickle cell is very very challenging.
A challenge Linda has faced for 75 years, and a challenge she says she will use, to encourage others who are fighting this disease.
"You Sickle Cell patients out there like me, don't give up! Hold on because you're going to be alright."
The sickle cell foundation will be hosting a 5k Saturday September 14th to honor those fighting this disease. I'll have the sign-up link, and more information linked to this story on our website at wtxl.Tv.
Sickle Cell Foundation 5Klink
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