On Saturday, April 30 at the DoubleTree by Hilton Cincinnati Airport Hotel, the Aplastic Anemia and MDS International Foundation (AAMDSIF) will host a free conference from 8:30 a.m. – 4:30 p.m. that is open to families, patient advocates, healthcare professionals, medical students and caregivers.
The conference focuses on improvements in the care of those living with Aplastic Anemia, MDS and PNH. Aplastic Anemia can affect people of any age, race and gender. But it is more common among children, teenagers and also among older adults. Between 600 and 900 new cases of Aplastic Anemia are diagnosed each year, and between 12,000 and 15,000 new cases of MDS are diagnosed each year. And approximately 500 new cases of PNH are diagnosed each year. All of the diseases affect a person’s bone marrow and can cause severe fatigue and a shortage of white blood cells, which can lead to a variety of other serious health issues.
Carolyn Kesterman (pictured), a 20-year-old sophomore Creative Writing student at Mt. St. Joe and her father, Rick Kesterman will attend the conference. Carolyn was diagnosed with PNH during her senior year of high school. She recalls getting fatigued easily and experiencing mental fogginess before her diagnosis. After her diagnosis, she started receiving treatment at Cincinnati Children’s and explains that she started to physically feel better. She says that the work that the AAMDSIF is doing is critical to helping people who have been diagnosed with Aplastic Anemia, MDS and PNH.
“Knowing that there is a foundation that focuses on people with my disease and diseases like mine gives me a sense of community,” she says.
“So much of our lives are about discovering our identities and displaying them once we figure them out. Although PNH is a bad thing, it is also part of my identity, something that requires my strength and attention on an almost daily basis. There aren’t many other people in the world with that same experience, but through the foundation, I can connect with others and feel like that aspect of my identity has a home. I hope to feel that when I attend the conference this month,” she explains.
Experts from the Cincinnati Children’s Hospital Medical Center (CCHMC) will present sessions at the conference, where patients and families can ask doctors and researchers questions pertaining to their disease.
Attendees of the conference will learn from top experts, connect with other patients and caregivers and maximize the quality of their care. They will also:
• Gain a better understanding about the disease and the latest treatment options available.
• Be better prepared to speak with your doctor about aplastic anemia, MDS or PNH
• Be connected to a community of patients and families who genuinely understand
• Learn specific steps to become a powerful patient and knowledgeable advocate for the care and treatment that’s right for them
AAMDSIF will offer these new sessions at their 2016 conferences:
• Clinical Trials from A to Z: Understanding the Basics
• The Value of Sharing Your Wishes: Advance Care Planning & Decision Making
• Navigating the Health Insurance Maze: Making Sense of Public & Private Insurance
To learn more and to register for the conference, visit http://www.aamds.org/