June is Myasthenia Gravis Awareness Month and we wanted to remind you of our annual golf outing to raise funds to support those affected by MG and their families. In order to give a human face to this disease we also wanted to share an excerpt from a letter written by Mark Hosking, our golf outing chairman, to all of his friends and colleagues, and a newsletter article written about his daughter Leanne.
“The Myasthenia Gravis Association (MGA) is a nonprofit organization dedicated to serving the needs of people with MG, a neuromuscular disease. The Association assists patients and their families in coping with this disease through education, diagnosis, treatment and support.
Myasthenia Gravis affects all races, genders and at any age. Most cases of MG are diagnosed in young women (Under 30) and older men (Over 55). MG is not contagious. The major symptoms of Myasthenia Gravis are: blurred and/or double vision, involuntary drooping of the eyelids, slurred speech, weakness in facial muscles, difficulty in chewing and swallowing and sometimes breathing, difficulty in walking and talking and unusual tiredness in the arms and legs. Myasthenia Gravis is not a “well known” condition, but there are 36,000 Americans that have this disease right now.” – Mark Hosking (Mark’s daughter was diagnosed with MG in 2010.)
LIVING WITH MG – Leanne Hosking
If you met Leanne, you’d probably never guess she is battling a neuromuscular disease. She is a lively 32-year-old woman who works full-time, exercises daily, and enjoys traveling the world. But this wasn’t the case three years ago when she suffered from severe muscle weakness and fatigue. She couldn’t drive at night and found it difficult to complete everyday tasks like getting dressed and brushing her teeth. She battled double vision and scarily navigated her way through immigration in Germany with one eye covered because she refused to cancel a preplanned European vacation.
She was diagnosed with Myasthenia Gravis at the age of 29 after suffering from noticeable muscle weakness in her arms. Shortly after diagnosis, she was referred to have a thymectomy, for which she sought Dr. Mark Orringer, thoracic surgeon at the University of Michigan Health System. Dr. Orringer referred her to neurologist Dr. James Teener for plasma exchange in preparation for the surgical removal of her thymus gland. The actual surgery presented no major problems for her physically, but she still has not achieved remission of symptoms as hoped. She is still under the care of Dr. Teener at U of M with her current course of treatment including two oral medications, CellCept and Mestinon, and biweekly plasmapheresis treatments.
Leanne works as a court clerk in the Detroit court system. Luckily, she has a very supportive team of coworkers that permits her to receive plasmapheresis during work hours at the U of M Hospital in Ann Arbor. On her current treatment plan, Leanne’s strength has stabilized and she has resumed her normal activities. Leanne loves riding her bike and averages about 60 miles a week in the summer. In addition to biking, she plays tennis, dances, and weight trains all to combat her fatigue and prevent muscle atrophy.
Since her diagnosis and surgery, she has traveled to Florida, Hawaii, and the Dominican Republic, as she finds the warm weather to be a favorable environment for her physical strength and well-being. Leanne copes with the physical and mental challenges this rare disease presents with the help of her amazing support system of family, friends, and fellow MG patients.