He has spent his life fighting the pain of an incurable disease. He doesn’t let it define him. He is leaving his mark by serving others.

By IU Health Senior Journalist, T.J. Banes, tfender1@iuhealth.org

When Cleo Camphor shows up for an appointment he arrives early. He wears his Sunday best and wide welcoming smile. He often says: “Thank you for taking the time.”

He immediately shows interest in the wellbeing of those in his presence. “How are you doing?” he asks. Mere acquaintances would rarely guess that Camphor has spent his life fighting a pain that some say is worse than childbirth.

He is among the estimated 200,000 Americans diagnosed with Sickle cell disease, an inherited group of disorders where red blood cells contort into sickle shapes. The cells die early leaving a shortage of red blood cells and can block blood flow resulting in serious pain. Treatments can include medication, blood transfusions, and in some cases, a bone-marrow transplant.

At IU Health, Camphor is in the care of Dr. Naveen Manchanda.

“I’m blessed to be in the care of Dr. Manchanda. He understands all the pain in my back and legs. He listens. He hears me when other doctors didn’t think I would make it,” said Camphor, who turned 74 on May 25th.

Dr. Manchanda is part of a group of hematologists and oncologists at IU Health working with patients living with Sickle cell disease.

“IU Health’s mission is to provide excellent, personalized, lifespan comprehensive care for all patients living with sickle cell disease in Indiana,” said IU Health Dr. Andrew Ross Wickman O’Brien, director of the adult Sickle Cell Disease Program.

IU Health is a member of the newly formed National Alliance of Sickle Cell Centers, an organization committed to providing support to hospitals and disease centers offering comprehensive patient care.

“We are working with other leaders in sickle cell care across the country to set best practices for sickle cell care. This includes providing not only excellent medical care, but also access to mental health services, social work, and cutting-edge research,” said Dr. O’Brien. “We also see it as essential to our role to provide education for patients, families, medical professionals, and communities as a whole as well as advocate for increased funding for sickle cell disease care and research.”

Camphor credits his healthcare team and his faith for the triumphs in his life. He also has never smoked or drank alcohol a day in his life, he said.

Camphor was diagnosed with Sickle cell in 1975. “It was a time when people didn’t know what to do about it,” said Camphor. He was told he likely wouldn’t live past the age of 20. Approximately one in 12 African American men carry the sickle cell gene. Camphor has lost family members to the disease.

Born in Mississippi in his grandmother’s home to his teenage mother Camphor was delivered by a midwife. He recalls growing up under the influence of two strong women – sharing a home overlooking the southern cotton fields. He spent much of his boyhood watching other children play outside. He was in too much pain to play and couldn’t participate in sports. When he was bullied and didn’t feel well enough to attend church or school, it was his grandmother who coaxed him and advocated for him to stay strong.

“Self-pity wasn’t rewarded by my grandmother. Her actions helped build my character,” Camphor said. He was the oldest child with several brothers and sisters. They grew up with hardworking men who worked the plantation farm from sun up to sun down, and women who worked the cotton fields and harvested pecans from the pecan trees. In the winter months the men would work on farm equipment and the women would gather leftover cotton and stitch quilts. Camphor did what he could to help out.

“I knew I could make a different life. I knew I could be better,” said Camphor. “We lived on a plantation and when I decided to move to Indianapolis, I brought all of my family with me.”

He married his teenage sweetheart – the first girl he took on a drive in his two-tone Plymouth Sedan. He and Gloria Jean settled on Indianapolis’ east side. They have one son, Corey.

For most of his life, Camphor worked for Colonial Bakery. He has also dedicated his life to encouraging others who face trials. Every week he turns to the streets to feed the homeless and distribute blankets. He visits those living in nursing homes, appears on a YouTube series with God’s Mission Ministries, and has written a book about this life’s experiences.

“From Pain to Purpose,” is a 32-page account of Camphor’s life – growing up with Sickle cell in a time and place when little was known. He shares his experiences of overcoming hardship and pain – a story about how the disease can either become debilitating or lead to greatness.

“My message to others is this: “Doctors are there for a purpose, but you have to have a mindset that you want to get better and do better, to make a difference in society,’” said Camphor. “You can have a difficult upbringing, but you have to rely on God and surround yourself with positive people.”