Monday, February 05, 2018
by Gail Appleson, Foundation for Barnes-Jewish Hospital
BJH, SLCH, WUSM | Diagnosed with sickle cell disease (SCD) when he was very young, Damien Nevels grew up receiving treatment at St. Louis Children’s Hospital and feared moving over to its big neighbor, Barnes-Jewish Hospital, when he turned 18.
“Children’s is like family,” he says. “It’s like growing up in your parents’ house and not wanting to leave.”
Although he resisted making the change, Nevels, now 23, is proud to be part of BJH, working as its first sickle cell transition intern. In this paid, part-time role, he assists younger patients and their families as they deal with challenges of the disease and the move to adult care.
The goal is to help patients transition to adult care, while managing their illness and obtaining regular medical treatment, thus reducing their reliance on emergency room care. The program also aims to educate medical staff about misperceptions they might have about SCD patients and help them overcome any unconscious biases. The Foundation for Barnes-Jewish Hospital funds this innovative internship.
“The sickle cell community is tight-knit, and Damien is able to pass along his knowledge to patients and serve as a mentor,” says J. Evan Sadler, MD, PhD, who holds the Foundation’s Ira M. Lang Endowed Chair, director and professor of medicine, Division of Hematology at Washington University School of Medicine. “Just the fear of the unknown is an important barrier, and Damien is able to help them overcome that barrier.”
As a sign of national concern about the challenges facing teen SCD patients, Nevels and Victoria Faulkner, RN, BSN, WUSM hematology clinical nurse coordinator, were invited to speak about the internship at the 45th annual National Sickle Cell Disease Association of America Convention in Atlanta this past October.
Also this year, WUSM received a six-year National Institutes of Health grant to research the best care for teens and adults with SCD.
In the United States, SCD is the most common hematological genetic disease in people of African, Middle Eastern and Mediterranean descent. SCD encompasses a group of red blood cell disorders resulting from abnormal hemoglobin, a protein that delivers oxygen in the body. The condition causes typically round red blood cells to become crescent-shaped, or sickled, and leads to chronic pain and fatigue, organ damage and reduced lifespans.
Studies on children with sickle cell disease have shown that early diagnosis and continued medical treatment can reduce symptoms, contribute to enhanced well-being and, ultimately, prolong life.
However, some young patients, who are used to the child-centered environment at a pediatric hospital, avoid getting regular care as an adult. According to a WUSM study of 3,200 SCD patients, emergency room visits tripled from age 15 to age 24. Nevels was almost one of them.
“I waited as long as I could to transition to adult care. I was thinking, ‘I’m healthy enough — maybe I can wing it,’” he says. “But my mother wouldn’t allow it.”
Those teens and young adults who do choose to “wing it” often end up seeking emergency room treatment when they suffer a pain crisis, Faulkner says. Although they’re experiencing excruciating pain, they may not appear to have a serious condition and end up waiting hours to be seen.
“One of the challenges is the misperception of these patients’ pain,” she says. “People have lived with it for so long they are able to function, masking their pain by using their cell phones or listening to music through headphones.
“But when they have to wait for a long period of time in the emergency room after suffering for so many hours, they often get angry and frustrated. This can affect their behavior toward medical staff, who may view them as difficult patients.”
Because Nevels' internship includes shadowing and interacting directly with health care professionals, he acts as an educator, helping them to better understand what SCD patients are going through and paving the way for them to become more sympathetic to patients.
In his mentoring role, Nevels acts as a sounding board for young SCD patients, listening to concerns that they might not feel comfortable expressing to adults. He introduces them to the hematology clinic at BJH, and gives them tips on managing pain and avoiding the triggers that cause it.
And a very big part of what he does is give patients and their families hope.
“I am touched by the younger patients who want to hear my story and to know that they can be healthy,” Nevels says. “If I can do it, they can too. They can learn from me and do it even better.”
Tags : Damien Nevels
Number of views (3742)/Comments (15)
2/5/2018 12:20 PM
The NPR show The 1 A just had a panel discussion on sickle cell disease that was very informative. Kudos to Mr Nevel for advocating for patients and families. The panel discussion on the radio show focused a lot on the lack of resources for adults with sickle cell disease.
2/6/2018 7:53 AM
2/6/2018 8:52 AM
The way you are helping others is wonderful. Thank You for sharing your story with the rest of us..
2/6/2018 11:00 AM
What a wonderful article and program. Congrats to Damien and the impact he's having on so many young adults to help them manage this often painful disease!
2/6/2018 11:04 AM
Way to go, Victoria!
2/6/2018 2:48 PM
Wow! what a great story, my 16 year old nephew has Sickle Cell, I remember when he was 8 he was hospitalized with complications of this disease, I pray for all our sick children that they will receive comfort and healing soon.
2/7/2018 7:24 AM
Thank you for sharing your story. Continue to allow God to use you to help others. You are a blessing.
2/7/2018 9:05 AM
Great job Damien. I remember caring for him here at Children's when he was a little boy. Wonderful to see that he has grown to be an intelligent young man in spite the challenges that he faces with his disease. He has sickle cell. Sickle cell doesn't have him!!!
2/8/2018 12:29 AM
What an incredible idea to create a liaison to help with the transition to adult care! Seriously, this was a terrific idea which I'm sure is helping with anxiety and fear in this patient population!
2/8/2018 4:40 PM
what a great story you are truly a wonderful and blessed person because what you are doing will have a impact on lives and give them a better understanding.
2/9/2018 8:26 AM
Damien Nevels, you are an inspiration to more people than you probably even know or can imagine. Keep up the good work and be encouraged within your own journey in this thing called life! Also, this is a great picture of you two!
Carla D. Templeton
2/13/2018 3:28 AM
What a blessing. Thank you for what you do and for sharing such a wonderful story.
2/14/2018 9:23 PM
Please continue being a Blessing for the families and children that suffer from this disease. Kudos to you!
2/16/2018 2:33 PM
3/4/2018 6:02 PM
Congrats such in impact your making