Sickle Cell Disease Awareness Month: What is Sickle Cell Disease

It's September, which means it's officially Sickle Cell Disease awareness month. This disease affects up to 100,000 Americans and more than 100 million people worldwide. It's a common occurrence, and it's passed on through genetics. So, what is Sickle Cell Disease, and how does it affect those who have it?

In this piece, we'll give you the 101 on Sickle Cell Disease and why September is the awareness month.

Sickle Cell Disease Basics

Sickle Cell Disease is a genetic blood disorder that affects the blood cells specifically. Anyone who has it has gotten the gene from someone they're related to. This condition causes blood cells to form a sickle shape, like the standard antique farming tool.

With this unique shape, the blood cells cannot pass through the body properly and are likely to die more quickly, causing a severe lack of red blood cells in the body. With this lack of blood cells, anemia can start, and this causes complications. The shape of the blood cells also causes blood to not be able to enter certain parts of the body at times or to clot.

There are several types of Sickle Cell Disease, which we've outlined below.

HbSS

This type of SCD is considered Sickle Cell Anemia. People who have this form have received two separate sickle cell genes from each of their parents.

HbSD, HbSE, and HbSO

These forms of SCD are often considered rarer than HbSS. This is when someone inherits a sickle cell gene from one parent and an abnormal hemoglobin gene from another.

HbSC

This is another form of SCD that is due to an unnatural hemoglobin gene and a sickle cell gene combined. This form is less severe than the first two forms.

HbS Beta Thalassemia

This type of SCD is when someone inherits a sickle cell gene from one parent and a beta-thalassemia gene from another. The beta-thalassemia gene is another form of anemia that is rare. This can have varying effects depending on the person.

Symptoms of Sickle Cell Disease

Depending on which type of SCD you have, the symptoms can vary. Some of the first signs of SCD include:

· Severe fatigue

· Swelling in the limbs, hands, or feet

· Jaundice (when the whites of your eyes or skin turn yellowish)

· Feeling unwell

Most people with severe SCD get anemia. When SCD becomes severe, it is due to anemia. The symptoms of Sick Cell Anemia include:

· Pain in the body

· Extreme fatigue

· Paleness of skin

· Frequent infections

· Fever from infections/sickness

· Blood clots

· Swelling

· Nerve pain

· Dizziness

· Unable to walk properly

If you have any symptoms of anemia or you suspect you may have SCD, you can get a blood test to see if you have this condition at any clinic or doctor.

How to Get Diagnosed for Sickle Cell Disease

If you think you may have Sickle Cell Disease or you know that your parents could potentially have one of these types of genes, it's a good idea to get an SCD test.

Your doctor will give you a regular blood test by taking a sample from your vein and testing it in a lab. It is possible to have this test done from as early as 5-months old, so you can get your baby tested if you have Sickle Cell Disease or Sickle Cell Trait.

Frequently Asked Questions: SCD

Here are some of the most frequently asked questions about Sickle Cell Disease and similar conditions.

Are Certain Communities More Likely to Get SCD?

Yes. Sickle Cell Disease is more common in those of Sub-Saharan African descent, those from Spanish-speaking countries, and Mediterranean countries like Italy and Greece.

In the US, SCD is found in every 1 out of 365 Black or African American babies and 1 in every 16,300 Hispanic-American babies.

Due to a lack of resources, education, and visibility to this disease, many minority communities are not given proper care for Sickle Cell Disease, causing more deaths in these communities from the disease. It's imperative that efforts are made to care for these communities and bring awareness to SCD.

What's the Difference Between Sickle Cell Disease and Sickle Cell Trait?

Sickle Cell Disease is when someone has both an (S) sickle cell gene and another (S) sickle cell gene or an abnormal hemoglobin gene paired with the S gene.

Sickle Cell Trait is when one sickle cell gene is present, and the other is a normal gene. People with this trait generally lead everyday lives, and although they can experience mild anemia, it isn't as severe as SCD.

Keep in Mind: Even if you have SCT and not SCD, you should be careful and get your partner tested as well. You can pass on this gene to your children, and if your partner does as well, your child can be born with SCD.

Can Sickle Cell Disease be Cured?

The only cure for SCD is a bone marrow transplant or stem cell transplant. This is often done unless there are serious risks, major strokes, etc., causing continuous danger to a person. However, these procedures are costly in the US.

Complications of SCD

When it comes to Sickle Cell Disease, there are many complications that can occur. You should check with your doctor if you have this disease and continue with frequent checkups. Some of the difficulties you can face as a person with this disease include:

· Stroke

· Heart attack

· Anemia

· Vision Loss

· Acute Chest Syndrome

· Ulcers

· Hand and Foot Syndrome

· Reynaud's

· Jaundice

· Organ Damage

It's important to know that it is still entirely possible to live a normal and healthy life with SCD. It is not a death sentence.

Continue reading below to find resources specific to SCD for those who have it or education for those who'd like to learn—and happy Sickle Cell Awareness month!

Resources

If you have SCD, know someone who does, have SCT, or just want to learn, there are plenty of resources out there about SCD so you can learn more.

Support and Education Platform for SCD and SCT- Sickle Cell Disease Association of America

CDC Information on SCD and SCT- Centers for Disease Control and Prevention USA

American Society of Hematology- Education, and information on blood diseases

Bone Marrow Donation Site- Find a bone marrow donor match

Online Sickle Cell Community- For those with the disease or trait

Dealing with Sickle Cell in School- For kids and families

If you're looking for more resources, you can check out the resource page at SCD Association of America.