Providing holistic care for patients diagnosed with Sickle Cell Disease

It’s a disease that easily hides its symptom from the outside world. Those diagnosed have learned to advocate for their needs - including emotional support.

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

Conley Scaife was diagnosed with Sickle Cell Disease when he was 10 months old. Now, he is 33 and has learned a lot about his condition over the years. Sickle Cell is an inherited blood disorder marked by defective hemoglobin. It is unpredictable and can impact every part of a person’s life. It can cause serious pain, hearing and vision loss, leg ulcers, gallstones, and stroke.

It can also cause depression and anxiety. It’s often difficult to maintain a full-time job and establish relationships with people who understand the disease, said Scaife.

“I mostly keep to myself. The nurses, doctors and social workers at IU Health are my biggest support network,” said Scaife, of Indianapolis. During a recent transfusion of pain medication, Scaife was met by a visitor, social worker Kate Dobson who is facilitating a new adult “Sickle Cell Support Group.” The first group will meet Monday, June 3, from 1-3:30 p.m., in Room 101 of the Simon Cancer Pavilion. For more information: Call or text, 317-519-2872, or email kdobson@iuhealth.org.

“Many patients have reported feeling voiceless throughout their journey with Sickle Cell. Support groups are incredibly powerful to feel heard and seen, both to create a space for emotional healing and to exchange practical tips,” said Dobson. “The hardworking Sickle Cell care team at the Simon Cancer Center know their patients well and know how much psychosocial factors, in addition to racism and discrimination, can affect a patient's ability to access care. In listening to our patients, we decided it was time to start a support group.”

Starting out, Dobson will act as a group facilitator and will listen to those in attendance to see what they need in the way of resources.

“Participants should feel free to bring family members/caregivers and if they can’t make it to the group, feel free to reach out to me. We are creating a space, but the group belongs to the IU Health Sickle Cell community and we want to reflect their wishes,” said Dobson.

Scaife said the group is an answer to his needs. He is in the care of IU Health’s Dr. Rakesh Mehta and has been treated with blood exchanges and pain infusions. Over the years, he’s been rushed into surgery for blood clots in his lungs, and has suffered through days on end where his pain was at a level “five” on a scale of 1-10, and said he has been on his death bed twice.

But still he persevered.

A graduate of Pike High School, Scaife received a full scholarship to Xavier University of Louisiana, the only historically Black, Catholic university in the United States. Scaife majored in computer science and graphics and was on track to graduate in 2013. He didn’t play team ball as a student at Pike, but Scaife was a walk-on for the “Musketeers” basketball team. One semester shy of receiving his degree, he went in for a layup, was cut off at the basket, and landed hard on his hip.

“There was a lot of adrenaline so I didn’t feel as much pain as I should have,” said Scaife. He finished the game, went home, went to bed and the next day his roommate had to help him off the floor. At Tulane Medical Center, doctors reviewed his condition, considered his diagnosis of Sickle Cell, and advised him to return to Indianapolis and his team of doctors at IU Health. His parents drove 16 hours, brought him home where he underwent hip surgery in the care of Dr. John Hur.

“Dr. Mehta monitored me closely. I had two total hip replacements in three months and it took me 12 months to learn to walk again,” said Scaife. He added, “I would still like to get my degree, but I have no regrets because I tried something I didn’t think I could ever do.”

It’s that kind of inspiration that he hopes to bring to a support group. In the past few years, he’s moved out on his own, and started working at Panera Bread.

He has also learned more about his disease. His father passed on Christmas Eve 2020. He was one of 12 children and didn’t know that he had Sickle Cell. His mother and older brother carry the gene but have not shown signs of the disease.

“I look at teens now passing away from Sickle Cell and it’s sad. They don’t know about the meds or have a hematologist who understands the disease,” said Scaife. He has also found support through the Martin Center, a human services agency that provides a holistic approach to those diagnosed with Sickle Cell. Some of those services include monthly support groups, food pantry items and Gatorade, financial assistance, scholarships, and transportation assistance.

When he’s feeling his best, Scaife enjoys working on cars - something he learned from his uncles and grandpas.