Spotlight on pro bono: National Marfan Syndrome Awareness Month
As you consider the importance of pro bono in your community, please remember that there are a number of other causes that need our awareness and help. For my family, February means National Marfan Syndrome Awareness Month.
My daughter, Kate, never met her father. He died from complications of marfan syndrome three weeks before Kate was born. Though he had been living with the genetic condition all of his life, he looked healthy and felt healthy until irreparable damage had been done to his cardiovascular system. By the time he was diagnosed, he had multiple aortic dissections and congestive heart failure. My husband was thirty-one years old when he died.
Marfan syndrome is a connective tissue disorder. The National Marfan Foundation estimates that 1 in 5000 people are affected with marfan syndrome, and that approximately half of those people are not diagnosed. The most common physical characteristics include very tall stature, long arms, long legs, long fingers, long toes, loose-jointedness, scoliosis, and flat feet. Marfan patients often have crowded teeth and near sightedness. Please visit www.marfan.org to learn more about the condition and to see if you or someone you care about should ask a doctor about marfan syndrome.
Kate was diagnosed with marfan syndrome when she was very young. With proper medical treatment and lifestyle modifications, she could have the same life expectancy as her classmates. Without the early diagnosis and proper treatment, she could not have that chance.
Please remember this and other causes as you consider your service to the community this month.
Ramona Sullivan, of Paris, is a staff attorney with Land of Lincoln Legal Assistance Foundation. She is the President of the Edgar County Bar Association and serves on the ISBA Standing Committee on the Delivery of Legal Services.