According to the Centers for Disease Control and Prevention, sickle cell disease affects an estimated 80,000 to 100,000 Americans. It is most prevalent in people with ancestors from Africa, South or Central America, the Caribbean, Mediterranean countries, India, and Saudi Arabia.
Shanta and Derek Robertson are very familiar with these numbers. The Ellicott City residents have two sons who were diagnosed at birth with the blood disorder after routine newborn blood screenings indicated the defining mark of the disease — the presence of red blood cells in the form of a sickle or crescent shape.
Sickle cell disease (SCD) is not contagious; rather it is inherited. The major symptom of the blood disorder is periodic episodes of pain lasting for hours or somethings weeks. Cases involving intense and prolonged episodes often require hospitalization and result in missed school and work. In addition, sickle cell patients can suffer from strokes, organ failure, loss of sight and permanent bone damage.
While there is no cure for the disease, early diagnosis and consistent medical monitoring and treatments are the keys to managing this life-long disease.
"Even though SCD is the oldest genetic disorder known, there is only one drug approved in the United States for its treatment. This drug does not work for all patients and patients, like our son, who take it, must be monitored constantly to guard against dangerous side effects," said Derek Robertson.
Over years, the Robertson family has benefited from the advice of local medical practitioners. In particular, Dr. James Casella and Stephanie Fleckinger R.N., who serve as director and pediatric hematology nurse, respectively, at the Johns Hopkins Children's Center Department of pediatric hematology and Dr. Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins University School of Medicine, are chief among the family's invaluable group of medical allies.
In 2006, the Elliott City couple decided to give back to the community and help local sickle cell families by establishing the Maryland Sickle Cell Disease Association Inc.The organization aims to bring awareness of sickle cell disease services offered in Maryland and to promote sickle cell advocacy, education and research.
On Saturday, Oct. 5, at 9 a.m. the MSCDA is hosting the first annual Pathway out of Pain Sickle Cell Disease 5K Walk at Rockburn Branch Park West (rain or shine). The fundraiser will help the organization to conduct educational activities to raise SCD awareness in schools, churches and in the community and parent-to-parent support groups.
The Rev. Robert A. F. Turner, senior pastor of St. John's Baptist Church, will serve as this year's Walk honorary event chair. For many years, Rev. Turner and St. John's have been instrumental in supporting MSCDA. The Walk is family and pet friendly. For more information or to register for the Walk, go to www. marylandsicklecelldisease.org or call 410-465-4822
Visit historic Ellicott City this weekend to enjoy the town's annual Fall Festival held in tandem with the Main Street Music Fest and First Artwalk.
On Saturday, Sept. 28, from noon to 10 p.m, historic Ellicott City will be the host site for a full day of free family fun with live music, kids activities, craft beer gardens and open historic sites.
The Main Street Music Fest — billed as the "Mid-Atlantic's FIrst Major Unsigned Artist Music Festival" — will bring over 70 musical acts, including 60 bands, to the downtown area at indoor and outside venues, including nine stages.
From noon to 5 p.m., enjoy tours of artist studios, watch demonstrations, and view local galleries during the town's First Artwalk. Pick up your Artwalk passport and guide at the Artwalk tent located at the Log Cabin on the corner of Main Street and Ellicott Mills Road.
Parking options for the all the downtown Ellicott City events include street (metered) and lot parking or enjoy the shuttle service that will drive people from the Courthouse parking lot to lower Main Street and back.
For more information, go to visitellicottcity.com .Copyright © 2014, The Baltimore Sun