Sascha Gallardo - July 14, 2023
Acute Disseminated Encephalomyelitis (ADEM) is a rare disorder marked by severe swelling in the brain and spinal cord. It usually occurs after a bacterial or viral infection, commonly affecting the upper respiratory tract. The inflammation is thought to stem from an autoimmune reaction, not directly caused by the virus or bacteria. ADEM can affect individuals of any age group.
ADEM symptoms may include fever, headache, nausea, vomiting, fatigue, and muscle weakness. Patients may also have confusion, blurred vision, seizures, paralysis, and, in severe cases, coma. Symptoms vary depending on the primary affected area, whether the brain or spinal cord.
There is currently no definitive cure for ADEM. Doctors often rely on the administration of steroids to reduce inflammation and alleviate symptoms. Additionally, plasmapheresis, a procedure that separates components of the blood to control the autoimmune response, may be employed as a form of treatment for the inflammation associated with ADEM.
Patients have the potential for overall improvement in their physical, cognitive, and emotional well-being although the recovery process may be slow and necessitate extensive rehabilitation sessions. These often involve a combination of physical therapy, occupational therapy, speech therapy, and other specialized interventions tailored to address specific impairments.
ADEM can have a significant impact both on the patients and their families. Promoting understanding of this impact can foster empathy, support, and ultimately enhance the care and quality of life for those affected.
Impact on the Patient
Physical
ADEM has a range of physical effects on patients that can significantly impact their daily functioning and overall well-being. One possible manifestation of this disorder is paralysis, which can occur suddenly and affect various parts of the body. For instance, some patients may experience paralysis on their entire left side, while others may have paralysis in both feet. This loss of motor function can greatly affect the patient’s ability to perform everyday tasks, resulting in a loss of independence and increased reliance on caregivers or assistive devices.
In addition to paralysis, ADEM can cause other neurological impairments. Patients may experience a loss of vision or have difficulty processing visual information. They may also struggle with speech and communication, finding it challenging to articulate their thoughts or express themselves verbally.
Cognitive impairment is another common effect, with patients experiencing difficulties in memory, attention, problem-solving, and overall cognitive functioning. These cognitive challenges can range from forgetfulness to more profound difficulties in analyzing and figuring things out.
The day-to-day life of patients can be significantly affected by this range of physical, neurological, and cognitive impairments, with the specific impact varying depending on the patient’s age and role in their family. In the case of children, ADEM-related paralysis and other physical effects can hinder their ability to play, move independently, and engage in other age-appropriate activities.
For young adults attending school, the physical limitations imposed by ADEM may affect their mobility within the school environment, participation in physical activities, and overall ability to navigate the academic setting. They may also face challenges in processing visual information, impacting their ability to read, write, and engage in classroom discussions.
As for parents, the physical and cognitive impairments can disrupt their ability to fulfill parental responsibilities, such as caring for their children, participating in household tasks, and engaging in family activities. Overall, ADEM’s effects on physical functioning, vision, speech, and cognition have a profound impact on the lives of patients across different life stages and roles, necessitating adjustments, support, and adaptations to maintain their overall quality of life.
Emotional
Apart from the physical symptoms, ADEM can have a profound psychological impact on patients, leading to a range of complex emotions including frustration, anger, and depression among others.
For instance, patients may feel frustrated with the sudden onset of symptoms, the lack of control over their bodies, and the impact it has on their daily lives. It may stem from the inability to engage in activities they once enjoyed or perform routine tasks without assistance.
Anger is another emotion that can arise from dealing with ADEM. Patients may become angry about the disruption it causes in their lives, the challenges they face, and the limitations it places on their independence. This anger can be directed towards the condition itself, healthcare providers, or even towards loved ones who may struggle to understand the emotional turmoil the patient is experiencing.
Depression may also be experienced by patients with ADEM. The disruption of their lives, combined with physical and emotional challenges, can lead to a profound sense of sadness, hopelessness, and a loss of interest in previously enjoyed activities. Feelings of isolation and the impact on relationships can further deepen the depressive state, making it crucial for patients to receive adequate support and mental health care during their recovery.
While not all patients with ADEM experience aggression, it can be a possible response to the changes. The frustration, anger, and other emotional upheavals associated with the condition may manifest as outbursts of aggression or irritability. It is essential for patients, their families, and healthcare providers to recognize and address these emotions to ensure a supportive and understanding environment.
Impact on the Family
Financial
The impact of ADEM extends beyond the individual patient and can have a significant effect on their family members. One of the key challenges families face is the financial burden associated with the treatment and rehabilitation of a loved one with ADEM. The cost of hospital stays, medical procedures, medications, and ongoing therapies can quickly accumulate, placing a strain on the family’s finances.
This financial burden may be further compounded if the patient requires long-term care or specialized equipment to aid their recovery. This is especially challenging if the patient is a parent who was previously contributing to the family’s financial needs. As a result, families may need to explore various avenues for financial support, such as health insurance coverage, government assistance programs, or fundraising efforts to alleviate the financial stress.
Investment of time
ADEM also demands a substantial investment of time from family members. The patient’s confinement during hospitalization or the need for frequent hospital visits and outpatient rehabilitation sessions can disrupt the family’s daily routines. Family members often need to dedicate a significant portion of their time to accompany the patient, provide emotional support, and manage logistical arrangements.
The impact on family is particularly challenging when ADEM strikes a household that already has multiple responsibilities. If the patient is a parent, their illness can significantly disrupt the family dynamics and place additional caregiving responsibilities on the other parent or family members. The added strain of juggling work, childcare, and household tasks can be overwhelming, often requiring adjustments and sacrifices in various areas of family life.
Emotional Impact
The emotional impact on caregivers and family members of individuals with ADEM is profound. Witnessing a loved one’s physical and emotional struggles can be heartbreaking, evoking deep empathy and sorrow. Constant exposure to their suffering takes a toll on caregivers, causing sadness, helplessness, and a sense of grief for the loss of their loved one’s previous health.
Caregivers may also feel guilt for being tired or overwhelmed by their responsibilities. The demanding nature of caring for someone with ADEM, both physically and emotionally, can be exhausting. They may believe they should always be available, feeling guilty for needing breaks or self-care. This guilt adds to their mental burden, increasing stress and potentially impacting their mental health.
Additionally, self-blame can be a common emotional response among caregivers and family members. They may question themselves, wondering if there was something they could have done differently to prevent or alleviate the condition. They may blame themselves for not recognizing the symptoms earlier or for not being able to provide a cure. These feelings of self-blame can be irrational and unfounded, as ADEM is a complex medical condition with no known preventive measures. However, the emotional impact can still weigh heavily on caregivers, contributing to their emotional distress.
Summary
ADEM has a significant and multifaceted impact on patients, affecting various aspects of their lives. The physical consequences, such as paralysis, vision issues, and cognitive impairments, can severely limit their daily functioning and independence. The emotional challenges they face, including frustration, anger, depression, and aggression, further compound the complexity of their experience.
Additionally, families of individuals with ADEM encounter substantial challenges, including financial burdens stemming from medical expenses and potential disruptions to their routines. The emotional toll on caregivers and family members is profound and necessitates support and understanding.
By fostering awareness and understanding of these effects, we can cultivate empathy, provide better support, and improve the overall care and quality of life for those impacted by ADEM.
Ben’s Friends has a free and safe online support community for patients affected by ADEM as well as their caregivers and family. Join our Living with ADEM Patient Support Community so you can get in touch with people who truly understand what you’re going through.