A myasthenia gravis support group is made up of people who meet to share their feelings in a relaxed environment, to gather information from others with myasthenia gravis and to learn how to cope with the unpredictable nature of this disease. Located in areas throughout California with one in Las Vegas, NV, the groups are designed to help participants deal with the many issues and questions that arise from having or being close to someone with myasthenia gravis. The ultimate goal is to empower people to live their lives to the fullest in spite of this illness.
Group leaders are volunteers; they are people who have a diagnosis of myasthenia gravis or family members of someone with myasthenia gravis. Within a group setting, leaders listen to others without judgment, with empathy and understanding. They share their own experiences and feelings in constructive ways that encourage others within the group to talk freely about themselves and their struggles with this condition.
It’s well known that an individual’s life and self esteem can be influenced by chronic illness. With myasthenia gravis, it’s even more complicated because it can be an invisible disease. A person can appear to be healthy while experiencing symptoms of weakness and fatigue that is not always visible to others. Depending upon severity, persons who used to accomplish activities with ease may undergo corresponding changes in energy level. Myasthenics may no longer be able to physically accomplish what was once a regular part of their lives, thus prohibiting enjoyment in everyday activities. All of these issues can become a source of frustration, stress or loss for affected individuals and their loved ones.
The need for practical information also extends to an myasthenia gravis patient’s loved ones. The lives of spouses, children and others may become difficult as well, especially when empathy and total focus is on the myasthenic. This is not to suggest that giving support is as hard as needing it. Absolutely not! But loved ones often must reevaluate their priorities, make compromises and sometimes put their dreams “on hold” as well. For these reasons, we welcome family and friends to take part in our myasthenia gravis support groups.
Meetings are held in California and in Las Vegas, NV. To join a group in your area or for more information, please contact the Myasthenia Gravis Foundation of California at (800) 574-7884.
If there is not a support group in your area or if you would like additional support from other patients, please join our Facebook support group - just search for Myasthenia Gravis Foundation of California and ask to join the group!