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The Catalyst

Senator meets with patients, announces national program

By Mikie Hayes
Public Relations

South Carolina U.S. Senator Tim Scott, second right, listens to Rossi Brown, left, an adult sickle cell patient, as he describes his struggles in living with the disease. Photo by Mikie Hayes, Public Relations

Imagine a child crying out in excruciating pain, just wanting her mom to take care of her. Her mother, however, is herself in agonizing pain. She puts her needs aside to care for her child, but who is there to care for her? Lucretria Sheridan and her daughter, Kali Kinloch, both of whom suffer with sickle cell disease, live this reality.

This situation troubles Julie Kanter, M.D., director of Sickle Cell Research at MUSC. She sees it all too frequently and it fuels her passion to find ways to treat families who lack supportive services to help them.

A disease that causes unbearable pain as well as symptoms that are frequently misunderstood, sickle cell disease has captured the attention of U.S. Sen.Tim Scott, who on Jan. 20 spent time visiting with sickle cell patients and families at MUSC while they shared with him how they suffer physically, mentally and emotionally.

The senator, whose own mother, brother and nephew have the trait, shared with the group his long-term commitment to finding solutions to the dreaded disease.

“Having seen effects of SCD in my own family and others in South Carolina, I have partnered with colleagues to create the bicameral and bipartisan Congressional Caucus on Sickle Cell Disease,” he said.  “This caucus will serve as a resource for members of Congress to learn more about the effects of SCD as well as promoting legislative agendas and public policy that will raise awareness and encourage improved treatment of SCD for individuals and their families.”

Sickle cell disease is a range of hereditary blood disorders, the most common of which is sickle cell anemia. It affects the body’s red blood cells, distorting the cell’s shape into a rigid sickle shape, according to the National Institutes of Health. The distorted shape blocks blood flow, induces inflammation and leads to ischemic pain and multi-organ damage.

The senator listened intently to patients like Kenneth Stewart, who attended the meeting with his family. His son, Kenneth Jr., and daughter, Jaylyn, both suffer from sickle cell disease. His wife has the trait.

With tears in his eyes, Stewart shared with the senator that he wants to work to provide for his family. He worked for SPAWAR in communications until the disease took its toll and he couldn’t keep up. He now works for an automotive parts company. He looked Scott in the eye and thanked him for caring. “Cancer, leukemia patients have someone to go to for help. We have had no advocates. We receive bad treatment. We just deserve fair treatment,” he said.

Stewart is encouraged by Scott’s interest and compassion. “The recognition of this disease is so important. I met someone personally who cares about it, who will take an interest in it, is positioned to do something about it and make changes. The senator will make all the difference.”

Kanter is also hopeful that Scott will help make strides in increasing visibility and awareness of a disease that is misunderstood and often ridiculed. “Sickle cell disease is the most common inherited blood disorder. It was originally identified 100 years ago but there is only one current disease-modifying medication. Having Sen. Scott come to MUSC to learn more about the disease and our patients may lead to much needed health advocacy for sickle cell disease. By committing to co–chairing a sickle cell disease committee, Scott is demonstrating his commitment to truly improving the outcomes and availability of resources for this orphaned patient population,” she said.

Scott’s visitors openly shared their frustrations with him. Longing to work, to be accepted, to be understood were common themes among those assembled.

Rossi Brown, an articulate, youthful 30–year old, who was diagnosed with sickle cell disease at 6 months, spoke from the heart and with great resolve: “The two biggest challenges I see,” he shared, “are how people view the disease and adequate resources to treat it. There are good programs for children, but when you transition from pediatrics to adulthood, it’s frustrating. There is a lot holding people (with sickle cell) back: employment, school, doctor’s appointments.”

According to both Stewart and Brown, the illness presents many challenges for employment. When an episode hits, the patient may be in the hospital for days  or weeks at a time, in pain comparable to that which cancer patients suffer.

“This illness prevents us from doing some types of work when we have an episode and that makes it difficult for employers, especially managers,” said Brown. “They are focused on the bottom-line dollars and they don’t want to have their employees out for two to three weeks.”

Brown believes that further education for sickle cell patients is key. “If we could do less manual labor and more work with our brains, it would be better for all concerned,” he said. “I would love to do communications work, if someone would give me a chance.”

Scott stayed after the meeting to personally speak with all the patients and to let them know he cares. He reiterated his commitment to making a difference in their lives.

“It would be difficult to overstate the enormous human and economic costs caused by sickle cell disease, and I was grateful to MUSC and the doctors, patients, and their families who came together to share their stories dealing with the disease,” he said.

For information on MUSC’s sickle cell program, visit http://www.musckids.org/blooddisorders/sicklecell.htm.

January 23, 2014
 
 
 

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