Taking control of a chronic disease

Awo Onwudiwe

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“Awo is always smiling- she has the type of smile that can light up a room,” says Kate Barrett, sickle cell nurse coordinator at Dayton Children’s.  However, because 12-year-old Awo suffers from sickle cell disease, she will live her entire life experiencing intense pain episodes that would make most people lose their smile.

But Awo is different. Whether she is acting, singing or playing volleyball, this active pre-teen has a bubbly personality and fun loving attitude that rubs off on everyone she comes into contact with. She has learned to overcome her disease with a positive attitude and alongside her mom is helping to pave the way for better treatment for adult sickle cell patients.  It is for these reasons that she has been chosen this year as an ambassador for Dayton Children’s.

Sickle cell disease is an inherited disorder in which red blood cells (which are normally round and flexible), are sticky, hard and shaped like crescent moons.  Awo’s parents, Mamle Anim and Ebere Onwudiwe knew their daughter would have sickle cell before she was born. Because Mamle and Ebere  knew they were carriers of the disease, they consulted a geneticist during Mamle’s first trimester and discovered their daughter would in fact live a life with sickle cell.

“When I first found out that Awo would have sickle cell, it was somewhat depressing. Being a physician I knew exactly what this would mean for my daughter,” says Mamle. “However we were also hopeful because it was the year 2000 and I knew that medicine was only going to continue to improve.”

In May 2000 Mamle gave birth to Awo and immediately began seeing Mukund Dole, MD, hemologist/oncologist at Dayton Children’s to treat her sickle cell. They learned what to expect and the protocol for when to come to the hospital.

 “Some of the complications associated with sickle cell may include chronic pain, susceptibility to infection, organ damage, and stroke,” says Barrett. “The most common symptoms that patients experience are painful episodes affecting any part of the body.  Some of my patient’s have described it as a knife stabbing you over and over again or a broken bone that the doctors can’t seem to fix. These pain episodes may last from a few days to a few weeks.  Many episodes can be treated at home, but some require a visit to the doctor or even hospitalization. “

For the first seven years of her life, Awo stayed fairly healthy. However, when she was in second grade, her condition worsened and Awo ended up having to stay for a week at Dayton Children’s on a number of occasions due to acute chest syndrome, a serious complication related to sickle cell. Not long after, she began experiencing intense knee pain and eventually required a blood transfusion.

Mamle recalls 2007 was a very difficult year due to the increased pain episodes and Awo ‘s increased  awareness of what life with sickle cell meant.

“I just kept telling her that it’s just a disease, it’s not what defines you,” says Mamle. “I encourage her that when she’s sick she’s sick, but when she feels better to get back up and just keep going. My role is to help her grow up and be independent in spite of this.”

By the time Awo was 9 she began taking ownership of her own treatment and learned how to cope with her disease. Awo has learned what medicines she needs to take every day and when she does have pain has learned what she needs to do in order to feel better.

“Awo has a pain plan for home and she starts that plan as soon as she has pain.  She has learned to listen to her body and know the proper things to do to keep herself as healthy as possible,” says Barrett.

If Awo doesn’t experience any complications she only has to come and see Dr. Dole every six months. However this past year Awo has had to spend some time in the hospital due to prolonged pain episodes. During this time she works with Dr. Dole and the sickle cell team to manage her pain so she can return home as quickly as possible.

“Dr. Dole is really funny,” says Awo. “He always comes in and makes jokes with me while he does the checkup. Dayton Children’s is a great place to go because they have a lot of nice people and decorate everything for kids!”

Since sickle cell is a lifelong disease, many children become accustomed to the friendly environment that Dayton Children’s offers for their treatment. When they become adults, the transition can oftentimes seem abrupt because many adult physicians are not trained in the protocol for treating and coping with sickle cell. Because of Awo, Mamle has begun working with Dr. Dole in an attempt to change this.

As a physician and educator at the Wright State School of Medicine, Mamle has begun a clinic with Dr. Dole at Five Rivers Health Centers in Dayton to teach residents about treating adult sickle cell patients.

“It has been quite an eye opener for the residents because treating adult sickle cell patients is something that they’ve never really talked about” says Mamle. “We hope that as they learn more about sickle cell and work with patients that they will then go on to teach others and in the future more doctors will be trained to work with adults in this setting.”

Thanks to this new clinic, Awo and her mom along with Dr. Dole are helping to pave the way for the future of sickle cell patients. Mamle hopes   by the time Awo is an adult some changes will have been made and she will still receive the type of care  she has experienced at Dayton Children’s.

However this is still a while down the road and Awo  has plenty of time to be a patient at Dayton Children’s. As an ambassador, Awo will share her story and her smile and offer hope and inspiration to others.

 “I’m excited to be an ambassador because I will get to go to different places and see different people and tell them about sickle cell and about all the good people working at Dayton Children’s,” says Awo.

“Awo will be an excellent role model for sickle cell patients or any patient with a chronic illness because of her positive attitude and how she has learned to live with her disease.  She can teach others that the disease doesn’t control you; you control the disease,” says Barrett

In fall 2012 Awo will be entering the 7th grade at Tower Heights Middle School. When she isn’t at school she can be found performing with the Town Hall Theatre and listening to her favorite musician, Selena Gomez.

“My mom always told me that just because I have sickle cell doesn’t mean I can’t go and do amazing things,” says Awo.

Make sure to watch for Awo during her year as an ambassador. She is sure to do some amazing things!


 

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