Perfect Strangers

From THE POSITIVE COMMUNITY magazine- September 2010

Perfect Strangers Wanted

Every four weeks at The Valerie Fund Children’s Center, 14-year-old Imani watches a perfect stranger’s blood travel into her arm through thin plastic tubing descending from a bag at the top of an i.v. pole. Perfect stranger because that stranger’s blood matches characteristics in Imani’s and prevents her from having more episodes of  excruciating pain that are the hallmark of sickle cell disease. Imani’s life has depended upon these strangers since she was two. 

Imani is Shelby Cook’s “miracle child.” She was told that because of her own sickle cell disease she would probably not conceive; at best, a pregnancy would end in miscarriage. But Shelby had faith. At 29, after three years of marriage, she gave birth to Imani, whose name is Swahili for faith. When Imani was four months old, Shelby knew that her mild-mannered baby’s grunts and cries meant she was having her first sickle cell crisis. The doctors confirmed the diagnosis when her hands and feet swelled and distorted. Imani was producing sickle-shaped blood cells that did not carry sufficient oxygen instead of healthy round ones that did. 

Nearly everyone in the African community has heard of sickle cell disease, but many are unaware of its profound impact or how they can help.  It is because of children like Imani that the need is urgent for people of African descent to donate blood that can stave off painful sickling crises and stroke, minimize organ damage and even prevent death.  Compatible blood will come from donors within the same ethnic group as the recipient, but it takes hundreds of donations to find the perfect match.  While only some sickle cell patients require regular blood transfusions like Imani does, most will need them periodically. 

That is why The Valerie Fund created its “RED IS THE NEW BLACK” Sickle Cell Awareness Blood Drives nearly three years ago: to create an opportunity to give blood as an immediate, life-saving response to a complex health issue for the African community by the African community and raise awareness about the disease.  Increasing blood donation in the community has its challenges. Many harbor an historic, reality-based distrust of the medical establishment, while others fear that any sort of needle can transmit HIV or other infections. The question is this: How to move past these stumbling blocks and let the opportunity to save a child to prevail. 

Nearly 500 children ranging from infants to young adults are served at The Valerie Fund Center at Newark Beth Israel, which hosts the largest pediatric sickle cell program in New Jersey.  Six Valerie Fund Children’s Centers provide medical and psychosocial care to the majority of children with sickle cell in New Jersey, as well as children with cancer and other blood disorders.  In the near term, The Valerie Fund hopes to raise enough money to fund a dedicated sickle cell social worker for families with young children at the Newark Center and a nurse practitioner to help adolescents and young adults learn to manage their own health as they transition out of the nurturing environment of pediatric care.  Physicians there recently received a federal grant to create North-Central New Jersey Sickle Cell Network and direct people with sickle cell who have fallen out of care back to the care of a doctor regardless of their economic status.

Like Shelby Cook and her daughter Imani, most patients suffer from chronic pain and are prescribed a combination of medications as common as penicillin and as concerning as morphine and oxycontin.  Effects of the disease range from stroke, which can lead to physical and learning disabilities; organ damage; and necrosis.  Necrosis has caused Shelby Cook’s hip bone to decompose.  Currently, she is bracing herself for a fourth hip replacement and is concerned about the pain in her elbow that’s been building.  In addition, sickle cell impacts peer relationships, education, employment and finances, and a person’s psychological and emotional state. 

About one in every 12 African-Americans carries the sickle cell trait; two parents with the trait have 25% chance of producing a child with the disease with each birth. Sickle cell trait, which evolved as the body’s natural defense against malaria, can be determined with a simple blood test and has no symptoms. In the U.S., estimates show that more than 80,000 people live with sickle cell disease. Well over 95% of those affected are black, but it also affects people of Hispanic, Middle Eastern and Mediterranean origin. In very rare cases, sickle cell trait has been linked to stroke and even death, but only in a perfect storm of environmental and physical conditions.

The Valerie Fund hopes that bringing the community out to its upcoming October blood drives at Liberty Science Center on October 2 and UMDNJ-NJ Medical School on October 23.  It doesn’t hurt and takes only a few minutes, but through that simple act, patients can get relief and their families whose lives are affected by the disease, will appreciate the showing of support.

Working with the Positive Community, the Red Cross, Jack and Jill of Greater Essex County, National Coalition of 100 Black Women of Bergen & Passaic, and the students of UMDNJ-New Jersey Medical School and the Red Cross, The Valerie Fund hopes to bring together perfect strangers to donate and learn, as well as to meet some of the families who rely on them.