What are the long-term effects of Reye's syndrome?

Dear Reader,  

Taking the time to understand your mother’s experience shows how much you care about her well-being. Reye’s Syndrome (RS) is a rare and serious condition that affects brain and liver function. While many children fully recover from their symptoms, some people experience long-term effects into adulthood. Read on to learn more about RS, its long-term effects, and how to support an RS survivor.  

What is Reye’s Syndrome? 

Reye’s Syndrome (RS) is a serious condition that primarily affects young people. It can develop after a child or teenager takes aspirin to treat a viral infection, such as the flu or chickenpox. Taking aspirin to treat a viral infection, especially as a child, can cause blood sugar levels to drop and increase the acidity of the blood. These effects can lead to ammonia building in the blood and this may cause brain and liver swelling.  

Since scientists discovered the connection between youth aspirin use and RS in the early ‘80s, this disease has become rare in the United States. However, some people may experience long-term effects as adults.  

What are the long-term effects of Reye’s Syndrome? 

The long-term effects can include physical disabilities related to fine motor skills and learning disabilities. Some effects may be more profound, such as difficulties with speech and language or with memory. Often these long-term effects are the result of brain damage that occurred during the initial infection, rather than from any chemical imbalances. This brain damage isn’t reversible, but it can be managed with support from health care providers and behavioral health specialists.  

Some common neurological issues in children with RS, which can extend into adulthood, include:  

• Mood swings 
• Sleep disturbances 
• Motor tics 
• Depression 
• Anxiety 
• Withdrawal from contact with others 
• Fear of hospitals and medical personnel 
• Hypochondria  
• Poor temperature regulation 

List adapted from Reyes Syndrome Foundation 

Severe cases of RS can also cause liver dysfunction, leading to lifelong monitoring and treatment. Additionally, some may experience growth delay or fluid retention problems that can show up as low blood pressure, intracranial pressure, and electrolyte imbalances.  

How is Reye’s Syndrome treated? 

RS treatment is mainly focused on reducing swelling in the brain and liver to prevent further damage. Treatments can include medications, ventilation support, liver support, and even liver transplants. The symptoms of RS can be severe, but it's possible for those who had RS to have a complete recovery with no long-term effects. 

Depending on the severity of the lingering effects, an RS survivor may be routinely checked, treated, and supported by a health care team. Individuals who experience long-term cognitive and neurological issues may be able to manage their symptoms by working with neurologists and behavioral health specialists.  

How to support a Reye’s Syndrome survivor? 

As a family member or supportive person for an RS survivor, it can be effective to approach mood swings and other lingering neurological issues with empathy, open-mindedness, and honesty. As such, you might encourage loved ones who had RS as children to seek mental health support, even if it’s years later. Your mother’s hypochondria could be related to the general trauma of having a serious disease as a child. 

In addition to clinical and family support, there are also many organizations that support people and loved ones of those who have had rare diseases like RS. These organizations can support individuals seeking appropriate medical care and offer financial, community, and mental health support. Some of these organizations include:  

• National Reyes Syndrome Foundation 
• National Organization for Rare Disorders 
• Rare Disease Community Support  

Providing support for anyone experiencing long-term effects of illnesses can be challenging, but these resources are here to help.  

Wishing you and your family well,