Among the multitude of challenges confronted by both children and adults with mitochondrial disease are those they face in the workplace and school environment as they attempt to navigate their disease and strive for a typical existence. Those issues can be considerable and may be compounded by others whose poor understanding of the disease process increases the challenges facing mitochondrial patients on a day-to-day basis.
While education is paramount to permanently altering the culture for patients with mitochondrial disease and other chronic disorders by increasing the understanding of the complexities and complications of the disease, we are still faced with navigating these issues today requiring a mechanism for confronting these problems in the school and workplace environment now.
As such, I, along with other colleagues, have created guidelines and, in some cases, specific protocols addressing the limitations of a given patient to allow them to succeed as best as possible in their educational and work endeavors.
The major categories of problems most often of concern for mitochondrial patients in the work and school setting are fatigue, pain and discomfort, autonomic dysfunction, nutritional and hydration issues, behavioral issues/cognitive changes, and, particularly for children, prevention of intercurrent illness. Outlined below are some of the general considerations for dealing with those problems.
Most individuals with mitochondrial disorders struggle with fatigue that generally progresses over the course of the day worsening in the afternoon and early evening. Affected individuals will struggle with inattentiveness and sleepiness that translates into poor school performance, failure to meet job expectations and problems simply getting through the day.
However, the implementation of certain modifications can markedly improve mitochondrial disease patients ability to function successfully during the day. For example, both children and adults can meet their goals for a given day if they are allowed several breaks to recharge their batteries. Sometimes, however, more drastic modifications are required such as reducing work or school hours or developing a schedule that is compatible with a given patient's daily energy issues, i.e. starting the day an hour later. Other modifications like the intermittent use of a stroller or wheelchair or utilizing other technology to improve functionality can assist with reducing fatigue.
Pain and Discomfort
Both children and adults with mitochondrial disease may have pain for a variety of reasons including headaches or migraines, muscle pain, abdominal discomfort from reflux, constipation and other G.I. issues, and nerve pain from nerve damage that can cause numbness, tingling and burning in the hands and feet often requiring the use of medication to dull or eliminate the discomfort.
Dealing with pain in the school or work environment can result in irritability, social withdrawal, and poor productivity. Certain medications used to treat pain can also result in sleepiness or grogginess. While little can be done in the workplace or school environment to reduce or eliminate pain and discomfort, an awareness of these issues can lead to a better understanding of changes in behavior and attitude of affected patients.
The autonomic nervous system regulates body functions without our conscious control and includes modulation of heart rate, blood pressure, temperature, sweating and skin color changes (pallor or flushing).
Many mitochondrial patients have autonomic dysfunction. Clinical symptoms include intolerance of heat or cold with fluctuating body temperature, rapid or slow heart rate, low blood pressure, and skin color changes, in particular pallor, flushing and mottling of the skin, often associated with nausea and vomiting. These problems can worsen when an affected patient become stressed with, for example, an intercurrent illness.
Providing a comfortable ambient temperature in a workplace or school environment, including the use of an air-conditioned bus for students, and promoting good hydration during hot weather months can lessen the effects of autonomic dysfunction on a given patient. The using of cooling vests or neck wraps can also keep mitochondrial patients cool when outdoor activity is necessary although strenuous PE activity for students during hot weather months should be avoided.
Nutrition and Hydration
Many patients with mitochondrial disorders have problems keeping adequately hydrated or well fed because of low muscle tone, G.I. complications such as gastroparesis or dysmotility. As such, it is important to provide them with more opportunity to eat and drink consistently on their own schedules. Failure to do so can result in worsening of their weakness and fatigue.
Provision of a flexible eating and drinking schedule with small, frequent snacks and good hydration throughout the day can assist in preventing these problems.
Behavioral Issues/Cognitive Changes
Many children with mitochondrial disorders have developmental and/or behavioral problems often linked to their brain dysfunction. Adults can struggle with memory and processing issues, sometimes cognitive decline and neuropsychological issues.
Children and adults with these various issues but often react by becoming irritable, withdrawn, uncooperative and disconnected from their peers and colleagues.
For children, pacing learning and activities, allowing frequent breaks and providing access to adequate nutrition certainly can help reduce behavioral outbursts linked to these stressors. And for the adult population, making decisions to work part time or remotely can allow better functionality in the workplace.
Prevention of Infections
Patients with mitochondrial disease often develop a worsening of their problems, including fatigue, when they become ill. The recovery from such an illness can be prolonged, lasting days or weeks, and sometimes may be associated with the temporary or permanent loss of functioning. Precautions should be taken to reduce the number of infections in the school and work environment by utilizing regular handwashing, reducing exposure to peers who are ill, and implementation of any reasonable routine that helps promote personal hygiene in the work or classroom setting.
Patients with mitochondrial disease face challenges from both a medical and educational or employment perspective. Providing support in the school and work environment often allows them to reach their full potential. Utilizing these guidelines, and others, will assist in providing the best possible environment for success.
Fran Kendall, M.D.
This post is not meant to be a recommendation or a substitute for professional advice and services rendered by qualified doctors, allied medical personnel, and other professional services. The responsibility for any use of this information, or for proper medical treatment, rests with you.