Skip to main content

Things You Need to Know About Tuberous Sclerosis Complex

3 min read

By Jeff Hayward

Medically Reviewed by Dr. Gerald Morris

This is not an illness you hear about very often but for those who have it (about 1 million people around the world), it’s very real. Tuberous sclerosis complex (TSC) is characterized by non-cancerous tumors that grow throughout the body.

While they’re benign tumors, there can be significant health problems associated with the complex depending on the location and size of the tumors. Let’s take a closer look at six facts about this relatively rare disorder…

It Can Go Undetected

While (TSC) can be discovered in infancy or early childhood, some people deal with the disorder until adulthood before they actually get a diagnosis, according to the Mayo Clinic.

This is because the symptoms might be so mild that it doesn’t warrant a closer look, notes the source. In some cases, it goes completely undiagnosed, which could lead doctors to look at other causes for health troubles.

It’s a Genetic Condition

The Tuberous Sclerosis Alliance explains that TSC is a genetic condition, meaning it’s in the family bloodlines. The disease can be inherited from just one parent with the condition, or it can “result from a spontaneous genetic mutation,” adds the source.

The source also notes that children have a 50-percent chance of inheriting TSC if one parent has it. However, while it’s considered a genetic condition, “only one-third of TSC cases are known to be inherited,” says the alliance. The other cases are the result of the aforementioned genetic mutation during conception or early development that’s unpredictable.

There Are a Range of Symptoms

As mentioned before, the symptoms can differ on a case-by-case basis due to the location of the tumors. With that being said, there are some relatively mild to quite serious health complications that are associated with TSC.

Healthline.com explains aside from those who have mild symptoms that may not warrant much concern, others can experience developmental delay, autism, intellectual disabilities, seizures, and skin abnormalities. “This disorder can be present at birth, but symptoms may be mild at first, taking years to develop fully,” adds the source.

It Can Be Life-Threatening

To build on the list of symptoms, in some cases, TSC can be more than an inconvenience to a patient, it can be deadly. The Mayo Clinic reports there can be serious complications such as excess fluid in or around the brain due to a blockage of a ventricle in the brain (a condition known clinically as hydrocephalus).

Meanwhile, there can also be heart complications, such as blocked blood flow or irregular rhythm, as well as kidney damage, lung failure, vision problems, and an increased risk of developing cancerous tumors in the kidneys and brain, adds the source.

It Can Cause Mood and Behavioral Changes

While there are many possible physical and cognitive impacts of TSC, it can also change how a person behaves and how they cope with day-to-day life, notes Tuberous-Sclerosis.com.

For example, about 30 to 60-percent of patients with TSC develop anxiety disorders (such as panic disorder, depressive disorders, or obsessive-compulsive disorder [OCD]). It can also be the underlying cause of attention deficit hyperactivity disorder (ADHD) and can lead to “aggressive and disruptive” behaviors, such as hitting, biting, self-injury, and anger issues that occur in up to 50-percent of patients with TSC, adds the source.

There’s No Cure, But There are Treatments

Boston Children’s Hospital explains there’s no current cure for TSC, but this doesn’t mean a person with the disorder can’t live a fruitful life. Antiepileptic medications can help deal with related seizures and infantile spasms, while laser surgery and topical creams can help reduce skin lesions.

In some cases, surgery may be an option to remove tumors that are impacting organs. There are also behavioral therapies available for patients with TSC. “Many of the complications of TSC can be managed more effectively if they are treated early,” explains the source.

MD, Family Medicine, Internal Medicine

Gerald Morris, MD is a family medicine/internal medicine physician with over 20 years expertise in the medical arena. Dr. Morris has spent time as a clinician, clinical research coordinator/manager, medical writer, and instructor. He is a proponent of patient education as a tool in the diagnosis and treatment of acute and chronic medical conditions.

Your Health

Explore

Allergy-Proof Your Spring: Tips for Tackling Seasonal Allergies Before They Start
By Clarissa Vanner Your Health

Allergy-Proof Your Spring: Tips for Tackling Seasonal Allergies Before They Start

As spring approaches, so does the dreaded arrival of pollen, dust, and other common allergy triggers. Instead of waiting for symptoms to strike, take proactive steps to minimize exposure and keep sneezing, itching, and congestion at bay. A few simple changes can help allergy-proof your environment and make the season much more enjoyable. Start with […]

Read More about Allergy-Proof Your Spring: Tips for Tackling Seasonal Allergies Before They Start

3 min read

Seasonal Health Reset: How to Refresh Your Wellness Routine for Spring
By Clarissa Vanner Your Health

Seasonal Health Reset: How to Refresh Your Wellness Routine for Spring

As winter fades, spring offers the perfect opportunity to refresh your body and mind. Longer days and warmer weather invite more movement, fresh foods, and revitalizing self-care. A seasonal reset can help boost energy, strengthen immunity, and restore balance after months of cold-weather sluggishness. From clean eating and outdoor exercise to mindfulness and detox practices, […]

Read More about Seasonal Health Reset: How to Refresh Your Wellness Routine for Spring

4 min read

Adjusting to Daylight Saving: How to Prepare for the Time Change Without Losing Sleep
By Clarissa Vanner Your Health

Adjusting to Daylight Saving: How to Prepare for the Time Change Without Losing Sleep

As daylight saving time approaches, many of us struggle with adjusting to the time change, especially when it disrupts our sleep schedule. Losing an hour of sleep can leave us feeling groggy and out of sync, but with the right preparation, it doesn’t have to be a stressful transition. By making small adjustments to your […]

Read More about Adjusting to Daylight Saving: How to Prepare for the Time Change Without Losing Sleep

3 min read