Her mother,Tijuana Adams,was told about her child’s blood disorder six months into her pregnancy. With improvements treatments,Kaitlyn was able to receive a bone marrow transplant last year.
“We lived our lives day by day,minute by minute,second by second,” Adams said. “It’s a very stressful disease that affects,not just the child,but the entire family. I have to say that with this type of illness,and other illnesses,you have to have love and support from family and friends.”
Sickle cell disease is an inherited blood disorder,primarily in people of Hispanic and African descent.
The disease causes blood cells to take on a sickle shape and causes abnormal blood flow,which leads to clogging blood vessels.
The Centers for Disease Control and Prevention estimates that 90,000 to 100,000 people in the U.S. have sickle cell disease. About one in every 500 black births are affected and one in every 36,000 Hispanic births.
The disease or trait is usually diagnosed at birth with a routine blood test. It can sometimes be diagnosed before birth.
Allistair Abraham,a doctor at Children’s National Medical Center,said there are drugs that can help treat and potentially prevent the disease,including penicillin,which prevents the patients from developing Streptococcal infections that are caused by the sickle cell disease,and hydroxyurea,an oral medicine that produces fetal hemoglobin,which appears to have anti-sickling effects. Increasing those levels protects patients against some of the negative side effects of sickle cell disease,Abraham said.
“I was on hydroxyurea,” Kaitlyn said. “It worked on me for like two years,but there was a time where it wasn’t working for me anymore. The pain just kept coming.”
Sickle cell has many symptoms – including swelling in the hands and feet,pain,anemia,vision loss,infections,ulcers and strokes – and few treatments.
Children’s hospital offers bone marrow transplants that cure 95 percent of young patients with a good bone marrow match. A sibling match offers the best chance of a cure,but Kaitlyn’s older brother was not a match.
“I had found a match,probably around this time last year. I was very excited that I was going to go with the whole unrelated donor,but one day the donor has just dropped out,” Kaitlyn said. “That just broke my heart because I was already going through so much dealing with the disease,but God always has something better in store for you.”
Kaitlyn went to Johns Hopkins University Hospital in Baltimore,not too far from the family’s Waldorf,Md.,home,which determined that her mother was a half match.
“When we got tested,I wished that her dad was the donor,but unfortunately I ended up having to do it,” Adams said,citing her own fears of undergoing a medical procedure. “But of course,you would do anything for your child.”
“June was the best month of my whole 14 years of my life because I was finally getting rid of something that was holding me back,” Kaitlyn said. “On June 21,I got a bone marrow transfusion from my mother.”
After staying at the hospital for four to six weeks after the transfusion,Abraham said,patients have several checkups over three months.
“Sickle cell disease is interesting. The pain that you learn to have gets wired into your brain,” Abraham said. “So maybe if you are cured of the disease,it takes a couple of years,actually,for your brain to learn that you are not going to have pain anymore. It’s almost like a phantom feeling.”
The age cutoff for bone marrow transplants used to be 16. Due to science and technology,Abraham said hospitals now take patients up to age 25. Many adults don’t get bone marrow transplants.
“They can do other therapies,usually red blood cell transfusions,” Abraham said.
Abraham said bone marrow transplants are difficult for adults because they can’t handle the intense procedure.
Abraham said that many centers are collaborating to find better treatments for adults.
In addition to D.C.,Atlanta,New York and Los Angeles have high rates of sickle cell disease.
Reach reporter Alejandro Alba at [email protected] or 202-326-9866. SHFWire stories are free to any news organization that gives the reporter a byline and credits the SHFWire.