Last Updated on November 20, 2025 by Ugurkan Demir

Sickle cell anemia is often misunderstood. People think it can start at any time. But, it’s a lifelong genetic disorder that you have from birth. At Liv Hospital, we see adults who wonder if they can get it later.

The truth is, sickle cell anemia comes from a specific gene change. It’s an inherited condition. Symptoms might show up months after birth, but the disease itself doesn’t start in adulthood.

At Liv Hospital, we give top-notch care to adults with sickle cell disease. We use the newest medical tech and focus on the patient. Knowing it’s a genetic condition is key for adults worried about their health.

Key Takeaways

• Sickle cell anemia is a genetic disorder present from birth.
• It is not possible to develop sickle cell anemia later in life.
• Liv Hospital offers advanced care and support for adults with sickle cell disease.
• Understanding the genetic basis of the condition is important for adults.
• Comprehensive care includes the latest medical advancements and a patient-centered approach.

Understanding Sickle Cell Anemia: The Genetic Basis

Sickle cell anemia comes from a change in the hemoglobin gene. This change affects how red blood cells carry oxygen around the body.

The Hemoglobin Gene Mutation

This disease is caused by a specific change in the HBB gene. This gene is for the beta-globin part of hemoglobin. The change makes abnormal hemoglobin, called sickle hemoglobin or hemoglobin S.

Key aspects of the hemoglobin gene mutation include:

• A single nucleotide change in the DNA sequence
• Resulting in the substitution of glutamic acid with valine at the sixth position of the beta-globin chain
• Misfolding of the hemoglobin protein, leading to its polymerization under low oxygen conditions

Inheritance Patterns of Sickle Cell Disease

Sickle cell anemia is passed down in an autosomal recessive way. This means a person needs two bad copies of the HBB gene, one from each parent, to have the disease.

The inheritance pattern can be broken down as follows:

1. If both parents are carriers, there’s a 25% chance each child will have sickle cell anemia
2. There’s a 50% chance each child will be a carrier like the parents
3. There’s a 25% chance each child will neither have the disease nor be a carrier

Knowing this pattern is key for genetic counseling and planning families.

Can You Develop Sickle Cell Anemia Later in Life?

Sickle cell anemia is a genetic disorder that you have from birth. It’s not something you can get later in life. This condition comes from a gene mutation passed down from your parents. Even if symptoms show up later, the genetic change is there from the start.

The Genetic Timeline: Present from Birth

Sickle cell anemia happens because of a specific gene mutation. This mutation affects the beta-globin subunit of hemoglobin. People with two copies of this mutated gene, one from each parent, will have sickle cell anemia.

The timeline for sickle cell anemia starts at conception. It follows an autosomal recessive pattern. This means you need two defective genes to have the condition.

Why This Misconception Exists

Despite knowing the genetic cause of sickle cell anemia, many think it can start later. Several reasons explain this:

• Delayed diagnosis: Sometimes, sickle cell anemia is not found until later. This is true for those who don’t show severe symptoms early.
• Emergence of symptoms: Environmental factors or other health issues can cause symptoms to appear in adults who seemed fine before.
• Lack of awareness: Not knowing enough about sickle cell disease can lead to thinking it starts later.

It’s important to understand sickle cell anemia’s genetic roots. This clears up the myth that it starts later. While symptoms might show up at different times, the condition is always there from birth.

Delayed Diagnosis vs. Delayed Development

Many think sickle cell anemia can start in adults, but that’s not true. It’s often missed because people don’t know about it or it’s mistaken for something else. Sickle cell disease is a lifelong condition that shows up in different ways at different times.

Reasons for Undiagnosed Sickle Cell Disease

There are many reasons why sickle cell disease is often not found in adults until later. These include:

• Not enough people know about it, including some doctors and the public.
• Some symptoms are mild and not seen as related to sickle cell disease right away.
• It’s sometimes mistaken for other conditions like arthritis or fibromyalgia.
• Some communities don’t have easy access to healthcare.

Knowing these reasons helps us find sickle cell disease sooner and give better care.

Sickle Cell Trait vs. Sickle Cell Disease

It’s important to know the difference between sickle cell trait and sickle cell disease. Sickle cell trait means having one mutated gene, while sickle cell disease means having two.

People with sickle cell trait are usually healthy but might face risks in extreme situations. Those with sickle cell disease face bigger health problems.

Understanding the difference between sickle cell trait and disease helps us meet the needs of those affected. We can work towards earlier diagnosis and better care.

Why Symptoms May First Appear in Adulthood

Several triggers can make sickle cell anemia symptoms show up in adults who seemed fine before. Sickle cell disease is a genetic condition you’re born with. But why do symptoms sometimes appear later in life? There are many reasons.

Environmental Triggers

Environmental factors can trigger symptoms in adults with sickle cell disease. Extreme temperatures, high altitudes, or dehydration can cause a crisis. These factors can make symptoms worse, leading to noticeable problems.

Health-Related Triggers

Other health issues can also bring on symptoms in adults. For example, infections can make the body react in ways that lead to a sickle cell crisis. Also, other health problems can make the disease worse, making symptoms more obvious.

Stress and Lifestyle Factors

Stress and lifestyle choices can also lead to symptoms. High stress, whether physical or emotional, can trigger a crisis. Lifestyle choices like smoking or drinking too much alcohol can also make the condition worse. It’s key to manage stress and live a healthy lifestyle to reduce these risks.

Knowing what triggers symptoms is vital for adults with undiagnosed sickle cell disease. By understanding these triggers, people can take steps to manage their condition. This can greatly improve their quality of life.

Common Symptoms of Sickle Cell Disease in Adults

Sickle cell disease in adults can cause many symptoms, affecting their health in different ways. This genetic disorder is present from birth. But, its symptoms can change and become more complex as people get older.

Pain Crises and Their Manifestation

Pain crises are a key symptom of sickle cell disease. They happen when sickled red blood cells block blood vessels. This leads to tissue ischemia and pain.

These episodes can be caused by dehydration, infection, or extreme temperatures. The pain can vary in intensity and location. It often needs medical attention for proper management.

Managing pain effectively is key to improving the quality of life for adults with sickle cell disease.

Chronic Complications

Adults with sickle cell disease face chronic complications that can harm their health. Some of these include:

• Anemia due to chronic hemolysis
• Increased susceptibility to infections
• Cardiac issues resulting from chronic anemia
• Pulmonary hypertension

These complications need ongoing management and monitoring to prevent long-term damage.

Organ Damage Progression

Organ damage is a big concern for adults with sickle cell disease. Repeated episodes of vaso-occlusion can damage organs like the spleen, kidneys, and liver.

Regular monitoring and preventive care are key to prevent organ damage progression.

Diagnostic Process for Adults with Suspected Sickle Cell Disease

Diagnosing sickle cell disease in adults requires blood tests and genetic screening. It’s key for managing and treating the condition effectively.

Blood Tests and Genetic Screening

Blood tests are the main tool for finding sickle cell disease. They check for sickled hemoglobin and other signs of the disease. We use two main tests:

• Hemoglobin Electrophoresis: This test separates hemoglobin types to find abnormal ones.
• High-Performance Liquid Chromatography (HPLC): HPLC measures the exact types of hemoglobin.

Genetic screening is also vital. It looks at the HBB gene for the beta-globin subunit of hemoglobin.

Differential Diagnosis Considerations

When diagnosing sickle cell disease, we must think of other conditions with similar symptoms. These include other anemias, infections, and inflammatory disorders. A detailed differential diagnosis helps confirm sickle cell disease.

Advanced Diagnostic Techniques

In some cases, we use advanced techniques to check the disease’s extent or complications. These include imaging studies like ultrasound or MRI to see organ damage.

Accurate diagnosis lets healthcare providers create a treatment plan that fits the individual’s needs.

Living with Undiagnosed Sickle Cell Disease: Health Implications

Living with sickle cell disease without a diagnosis can severely affect your health. It impacts your physical and mental well-being. If not treated, it can lead to many complications.

Cumulative Organ Damage

Undiagnosed sickle cell disease can damage organs over time. Organs like the spleen, kidneys, and heart can suffer. For example, the spleen might not work right, making you more prone to infections.

Here’s a table showing possible organ damage:

Quality of Life Impact

Undiagnosed sickle cell disease can greatly reduce your quality of life. You might face chronic pain, frequent hospital stays, and emotional strain. These can hurt your work and personal life.

The emotional toll of living with undiagnosed sickle cell disease is significant. People may feel anxious, depressed, and isolated.

Psychological Effects of Late Diagnosis

Getting a late diagnosis of sickle cell disease can deeply affect your mind. You might feel relieved, angry, or frustrated. It’s a mix of emotions.

Support and counseling are key to dealing with these feelings. Healthcare providers should offer full support to help cope with the diagnosis.

Understanding the health risks of undiagnosed sickle cell disease is vital. It shows why early diagnosis and treatment are so important. This knowledge helps healthcare providers give better care and support.

Treatment Approaches for Adults with Sickle Cell Anemia

Treating sickle cell anemia in adults is complex. It involves many steps to ease symptoms and prevent serious problems. Each person’s treatment plan is unique, based on their specific needs.

Medication Options

Medicines are key in managing sickle cell disease. Hydroxyurea is often used to lessen pain crises and reduce blood transfusion needs. Other drugs help manage pain, prevent infections, and tackle other issues linked to sickle cell anemia.

• Hydroxyurea: Reduces frequency of pain crises
• Pain management medications: To alleviate acute and chronic pain
• Antibiotics: To prevent and treat infections

Blood Transfusions

Blood transfusions are vital for adults with sickle cell anemia. They increase normal red blood cells, lowering the risk of serious problems. This is very helpful for those with severe anemia or at risk of stroke.

1. Reduces risk of stroke and other complications
2. Increases normal red blood cell count
3. Improves oxygen delivery to tissues and organs

Emerging Therapies

New treatments for sickle cell anemia are being explored. Gene therapy and other new methods aim to fix the disease’s root cause. They could offer a cure for some patients.

• Gene therapy: Modifies or replaces the gene responsible for sickle cell anemia
• CRISPR technology: A precise method for editing genes

Liv Hospital’s Multidisciplinary Approach

At Liv Hospital, we use a team-based approach to treat sickle cell disease. We combine the latest treatments with a focus on the patient. Our specialists work together to create a treatment plan that meets each patient’s needs.

Our care includes:

• Collaboration between hematologists, primary care physicians, and other specialists
• Access to cutting-edge treatments and clinical trials
• Support services to improve quality of life

Managing Sickle Cell Disease as an Adult

Managing sickle cell disease as an adult requires a mix of lifestyle changes and preventive care. Adults need to think about how their condition affects their life. This includes many factors that impact their well-being.

Lifestyle Modifications

Making lifestyle changes is key to managing sickle cell disease. Adults should avoid extreme temperatures and stay hydrated. They should also eat a balanced diet.

Staying hydrated is very important. Dehydration can lead to sickle cell crises. Avoiding hard work and managing stress with techniques like meditation or yoga can also help.

It’s important for adults with sickle cell disease to be mindful of their surroundings. Avoiding high altitudes and extreme weather can prevent crises. These changes can greatly improve their quality of life.

Preventative Care Strategies

Preventive care is essential for managing sickle cell disease in adults. Regular health check-ups, vaccinations, and screenings can prevent complications. Regular vaccinations, like the pneumococcal vaccine, are important to prevent infections that can cause crises.

Adults with sickle cell disease should work with their healthcare team to create a care plan. This plan should include regular checks for complications and strategies to address them quickly.

Building a Support Network

Having a strong support network is vital for adults with sickle cell disease. This network can include family, friends, healthcare professionals, and support groups. Connecting with others who understand the challenges can offer emotional support and practical advice.

Support groups, whether in-person or online, provide a place to share experiences and learn from others. They offer insights into managing the condition effectively. By using these resources, adults with sickle cell disease can improve their well-being and navigate their condition better.

Genetic Counseling and Family Planning

Genetic counseling is key for family planning when dealing with sickle cell disease. It helps those with the disease or trait make smart reproductive choices.

Understanding Genetic Risk

Genetic counseling explains the genetic risk and chances of passing sickle cell disease to kids. Sickle cell disease is an autosomal recessive disorder. This means a child needs two bad hemoglobin genes, one from each parent, to have the disease.

• If both parents have the sickle cell trait, there’s a 25% chance with each pregnancy that the child will have sickle cell disease.
• If one parent has sickle cell disease and the other has the trait, there’s a 50% chance the child will have the trait and a 25% chance they will have the disease.

Genetic counseling gives a detailed risk assessment. It helps parents plan their family based on their genetic status.

Testing Options for Partners

Partners of those with sickle cell trait or disease can get tested. Carrier testing involves a simple blood test to check for the sickle cell gene.

“Genetic testing can provide critical information for couples planning a family, specially when there’s a history of sickle cell disease,” says Dr. [Last Name], a genetic counselor. “Understanding the risks and options available can significantly impact their family planning decisions.”

Reproductive Choices and Technologies

Couples at risk of having a child with sickle cell disease have several options. These include:

1. Prenatal testing: Testing the fetus for sickle cell disease during pregnancy.
2. Preimplantation genetic diagnosis (PGD): Used in conjunction with in vitro fertilization (IVF) to select embryos without the sickle cell gene.
3. Adoption: Considering adoption as an alternative to biological parenthood.

Genetic counseling helps explore these options. It gives the information needed to make the right decision for them.

Understanding genetic risks and reproductive choices helps those with sickle cell disease or trait plan their families. Genetic counseling is essential, providing guidance and support every step of the way.

Conclusion: Living Well with Sickle Cell Disease

Sickle cell anemia is a lifelong condition that people are born with. But, with the right care and support, adults can live full and happy lives. At Liv Hospital, we believe that better medical care and a strong support system are key to improving life for those with sickle cell disease.

It’s important to know that you can’t get sickle cell anemia later in life. But, if it’s not caught early, it can cause problems as an adult. By spotting the signs and getting medical help quickly, adults can manage their disease well and avoid serious health issues.

At Liv Hospital, we’re all about giving top-notch care to our patients with sickle cell disease. We want to make sure they get the treatment and support they need to live well. With the right care, adults with sickle cell disease can have a great quality of life. We’re committed to helping our patients achieve this goal.

FAQ

References

1. Piel, F. B., Steinberg, M. H., & Rees, D. C. (2017). Sickle Cell Disease. The New England Journal of Medicine, 376(16), 1561–1573. https://pubmed.ncbi.nlm.nih.gov/28423290/