Client Testimonials & Inspiring Stories!
One of our most active client families gained comfort about Hydroxyurea from our ADULT Support Group...
Their 14 year old daughter was diagnosed with SCD shortly after birth. Her parents reported that during her younger years she did well with traditional treatment for SCD pain. However in recent years, those medications became less effective as her pain crisis began to occur more frequently and lasted longer in duration.
At one of our ADULT Support Group meetings (held monthly) her parents expressed their frustration with their daughter’s situation. They had heard about the “newest” pain medication, Hydroxyurea, but had some concerns about it.
During this meeting, mothers of two other children active with our programs shared first-hand knowledge about the new drug, Hydroxyurea. Each mother has a child about the same age and they told of how well the medication is working for their children. They advised the parents to speak with the child’s primary care physician about giving the medication a try.
While attending the next monthly ADULT Support Group, the parents shared with the group how well the child is doing on the new medication. They expressed their thanks and appreciation to members of the group who had helped ease their minds about using Hydroxyurea to treat their daughter.
Her son, age 25, was diagnosed with SCD at birth and suffers with multiple chronic health problems related to SCD, including several strokes, which have left him partially paralyzed and unable to get around without the use of a wheelchair.
One year ago, she was at the brink of losing her job due to having to take off work frequently to attend to her son’s health needs. She mentioned that a social worker came to her job and conducted a SCD presentation which “opened the eyes” of her superiors and colleagues, which resulted in a much improved working environment for her.
The next day she was approached by her manager and several co-workers who expressed much more sensitivity to her situation. Her job is no longer at risk now.
When our social worker, Debra Bizzard, informed her that the social worker she had referenced in both instances was “herself, Debra Bizzard,” the mother became a bit overwhelmed with emotion. She expressed sincere gratitude for the Council, again, and requested re-admission to our program. The adult son also contacted the office and requested re-admission to our program.
In many cases, primary barriers to care include their inability to afford adequate insurance and their lack of transportation. Added to those barriers is the stressor of having to pay their utility bills.
One year was especially difficult for one particular family. The female, age 47, was diagnosed with SCD at age 16. She and her husband have been married for 17 yrs and together they are raising a 15 year old son who has SC trait.
She has multiple chronic health problems related to SCD, including a chronic heart condition. The family receives a small amount of welfare assistance and depends mostly on her disability check to get by. Often times they are forced to choose between purchasing her medications and buying groceries or paying light and gas bills. They have an older car which is seldom in working condition which means they have to call a cab or pay someone else to take her to-and-from her medical, and other-related, appointments.
Thanks to a small Highmark Grant, our Sickle Cell Council was able to provide limited financial assistance to our families to help alleviate some of the financial stressors they face. This particular family requested and received financial assistance to pay a portion of 2 utility bills (telephone and light). Additionally they requested and received financial assistance to pay for transportation to-and-from 5 SCD related appointments. The couple often express to our social worker that they do not know what they would do without the support and financial assistance they receive from our Sickle Cell Council.
Unfortunately there is no Department of Health funded community based organization assigned to that region of the state. Consequently, this family contacted us in desperation: A single mom, age 38 with 3 young sons, the oldest being age 8, was diagnosed with SCD at birth. Although low income, she did not qualify for welfare benefits because the child support provided by the boys father exceeds the welfare threshold. Due to lack of funds she slept on a single bed and the boys on the floor. We contacted various Help/Social Service organizations in her area and found a program to provide her sons with beds and provided her contact numbers for local food banks.
Bolanle Olaniran considers himself to be extremely blessed, in spite of the fact he lives with an incurable disease.
Olaniran is blessed because he actually lives with the diseases while watching many in his life lose their battle with it, including two younger brothers. But it was those deaths almost three years apart that led him 16 years ago to do something, to educate the public about sickle cell anemia, or sickle cell disease.
“After losing my second brother in 1999, that was the last straw,” said Olaniran, a professor in the Department of Communication Studies in the Texas Tech University College of Media & Communications. “It was something I was dealing with and I knew my brother had the disease but also believed that, with medication and frequent blood checking, it was kind of being managed. But I never thought I would lose two brothers within three years almost to the day of one another.”
It was then that Olaniran had what he called a “pity party” for himself and began praying for a cure, not just for him but for all those who are affected by the disease, especially parents who have to watch their children die from sickle cell.
But it also was the moment when he had an epiphany, realizing he could help others with the disease through his faith in God and with the help of his religious family at Redbud Baptist Church.
So, in 2000, he began the Cure Sickle Cell Ministries that provides counseling services to educate people about the disease and making the proper life choices in order to not only live as long with the disease as he has – going on 42 years – but also to limit the spread of the hereditary disease as much as possible.
“My goal has always been to seek every avenue to at least educate people about the disease and also help people who suffer from the disease,” Olaniran said. “One of the things our ministry tries to do is help people screen for the disease because it is one of the most misunderstood diseases.”
A native of Nigeria, Olaniran, 51, was diagnosed in 1974 when he was 10 years old. It is a disease that affects primarily people of African descent, but in smaller numbers also can affect Hispanics, Mediterranean, Asian, Caucasian and in particular those of Italian ethnicity. It also impacts Jewish people, though it is known as sickle beta thalassemia.
Sickle cell is a disorder of the blood, particularly the red blood cells that carry oxygen. Normal red blood cells are smooth and round and move through blood vessels with ease.
But sickle cell causes the red blood cells to become deformed, taking the shape of a curve, or sickle. Sickle cell red blood cells do not move freely through the vessels, often times clumping at intersections and becoming stuck. Those clumps block the flow of blood through the body that lead to the limbs and organs, causing severe pain, infection and organ damage.
Sickle cell also reduces the effectiveness of red blood cells. Where normal red blood cells have an average life of about four months, sickle cell blood cells last only between 20-30 days. That’s why blood transfusions are a vital part of fighting sickle cell disease.
“People who suffer from this disease have a very short life span,” Olaniran said. “I feel like I’ve been blessed that the disease has not really affected me the way it does others. People with sickle cell have a very low quality of life because they are constantly away from school or constantly in pain and have to deal with that. It’s not just a medical challenge, it’s a social challenge.”
In 2013, Olaniran became very ill and was in the hospital for four months, a period of time he admits he thought would be his end. But he recovered. He also spent another month in the hospital in 2014, but luckily has not had to go back since.
But because the disease deals with red blood cells and its oxygen-carrying capacity to necessary organs, he has been unable to fly since 2013, which has limited the traveling he used to do for the ministry, going to Africa, Southeast Asia and Brazil. He’s also undergone close to 15 blood transfusions in the last three years, whereas before his 2013 hospitalization he had undergone only one. Even that isn’t without risk as frequent transfusions can lead to liver damage.
“In the last three years I can see the age factor finally catching up with me,” Olaniran said. “I used to feel like I was indestructible, and unfortunately that’s not the case anymore. There was a time when I was undergoing transfusions about every two weeks.”
Part of Olaniran’s ministry is educating the public about the disease and how it is contracted. Sickle cell is an inherited disease, but it isn’t always passed on from a parent to a child. If only one parent has sickle cell but the other is unaffected, then all children produced will possess the sickle cell trait but none will have sickle cell anemia. If both parents possess the sickle cell trait, there is a 25 percent chance a child will be born with sickle cell anemia. There also is a 25 percent chance a child will be unaffected, while there is a 50 percent chance that a child will be born with the sickle cell trait.
Many infants don’t show signs of sickle cell until four months of age. Those signs include fatigue, pale skin and nails, jaundice and shortness of breath. Those suffering from the disease also suffer from sudden episodes of excruciating pain, mostly in the bones, lungs, abdomen and joints. Olaniran said there is only one FDA-approved drug used by sickle cell sufferers, and even then it’s a medication designed for cancer patients who develop anemia after going through chemotherapy.
“The only problem with that medication is anytime you design a drug for something and you try to use if for something different, not everybody responds positively to it,” Olaniran said. “There is ongoing research to find other medications and an eventual cure for the disease.”
In the meantime, Olaniran and Sickle Cell Ministries provide counseling services to not only help those who suffer from it to manage the disease but make quality life choices going forward, including the decision of choosing marriage partners.
Olaniran said he never discourages couples who both possess the sickle cell trait from having children, saying that is a decision couples must make with their doctors. Instead, he explains the risks that come with passing on the sickle cell trait and the possible dangers with a blood disorder.
“All those dangers are out there, but we can talk to them in general terms of educating them as to what is there, not so much to scare them,” Olaniran said. “I never regret the fact that I was born. I have two of the most wonderful parents in my life, and I couldn’t have been born into a better family.” In fact, it was that family, and his father in particular, whom Olaniran credits with being who he is today. When Olaniran was diagnosed in 1974, his father refused to let the disease be an excuse for Olaniran not achieving his goals or acquiring a quality education.
“He sat me down when I was young and said, ‘Look, I don’t care what disease this is, you will go to school, you will get an education, you will contribute productively to the society,’” Olaniran said. “I thank him for that today. I’ve put myself in a position that now I can encourage others, not so much in the sense of look at me and what I have done, but look at me as a person in terms of what God has done through me and how that is a positive for you.” That go-getter attitude is reflected in the Sickle Cell Ministries’ efforts not only into research on the disease but also providing the needed medical care and tests in order to screen for and treat the disease.
Screening for sickle cell is the first, most critical step, so hemoglobin types are detected to determine whether sickle cell is present. The roadblock becomes screening and treating those in rural areas who don’t have immediate access to medical care. Also, the ministry has been instrumental in raising money to purchase centrifuges and not charging patients for their use.
Olaniran said one of his former graduate students, Hilary Howard, played a critical role in the ministry. She helped the ministry acquire grant support through the Talkington Foundation and the Lubbock Area Foundation to mitigate the costs of screening. The Texas Tech Health Sciences Center is also crucial in the ministry getting a research rate on testing that knocked the price down to about 10 percent of its original cost.
He also has received help from the community at large in his fundraising efforts. Health Sciences Center President Dr. Tedd Mitchell, Texas Tech men’s basketball coach Tubby Smith, former city councilman Todd Klein and Lubbock assistant city manager Quincy White and many others helped in those efforts to educate the public about the disease and limit its reach.
“One of the greatest joys I have is when I finish my global health talks at the Texas Tech Health Sciences Center and other settings, talking to doctors, medical students and other attendees about the disease and how we need to take care of the patients,” Olaniran said. “One of the things that always happens is someone will say they didn’t know it affects their ethnic group. When you start to hear that you feel a sense of accomplishment.
“What does it hurt to know? Even if you get tested and find out it is positive, what’s the worst that can happen? If you don’t get checked and don’t have that information, you continue to live in ignorance, and ignorance can be a dangerous thing. That is one of the greatest accomplishments I personally feel is that sense of satisfaction that a difference has been made.”