November 17, 2020 – Cynthia Moon – About Sickle Cell Disease

Announcements

Katie Calloway, Social Media, announced that on LinkedIn she has created a company page for the Centerville Noon Optimist Club. She invites you to add your volunteer experience to your profile. The CNO logo will then show on your LinkedIn profile page. If you previously linked to CNO, link again to refresh the CNO logo.

Social Events

The annual Holiday Party will be virtual this year. It will be on Friday, December 11, 2020 at 6:30PM. Everyone is invited and there is no cost to attend. Christian D. Larsen Awards for lifetime achievement will be awarded to members of CNO. There is no cost to attend. The ugly holiday sweater contest will begin at 6:30 with prizes for originality. At 7 PM will be the Award Presentation. At 7:30, there will be a Holiday Trivia contest.

Cynthia L. Moon, Sickle Cell Project Director at Dayton Children’s Hospital

Nancy Lehren introduced Cynthia L. Moon, MSE, the Region 2 Sickle Cell Project Director at Dayton Children’s Hospital (DCH). The state of Ohio notifies Moon each time a child in the West Ohio region has an abnormal hemoglobin result after a newborn screening. The primary care physician is notified as well. At this point, the doctor can provide the confirmatory testing and follow-up education or they can refer the family to Dayton Children’s Hospital.

CNO’s Childhood Health and Wellness committee annually hosts a Build-A-Bear for Sickle Cell patients through DCH. Moon thanked CNO for having this fun event each year; the kids love it.

Her presentation is titled, “West Central Ohio Comprehensive Sickle Cell Center/Ohio Newborn Screening Program for Hemoglobinopathies.”

You can view the slide deck here

Check the slide deck for additional details not listed in the article.

In Ohio, about 100 kids a year are born with Sickle Cell Disease (SCD).

Sickle Cell Disease is the most common inherited blood disorder in the U.S. Sickle Cell Disease is a term used to describe a group of disorders that affect the hemoglobin in red blood cells. The abnormal blood cells are shaped like a sickle. It is a life-long condition, characterized by pain and the disease does not have a universal cure. The abnormal cells are jagged, stiff, sticky and they tend to clump together and occlude blood flow. This then causes damage to tissue, blood vessels, organs and bone.

Sickle cell disease is an invisible disease. Many patients look normal but are experiencing severe pain and organ damage. They also deal with stigmas and stereotypes. To understand the pain of the disease, imagine having pieces of broken glass flowing through your body.

In the United States, 100,000 Americans are affected by SCD and it affects millions of people worldwide. Anyone can get SCD, although it is more common in people with heritage from Africa, Asia, Europe, Mediterranean areas (Turkey, Greece, Italy), Middle East and Central and South America.

Ohio’s 88 counties are served by six regional sickle cell projects (ORSCP). Each ORSCP is funded by a grant from the Ohio Department of Health Sickle Cell Services Program.

Moon’s region includes 17 counties. Her counties with the highest concentration of cases are Allen, Clark, Greene, and Montgomery. The headquarters for her region is the Hematology and Oncology Department at Dayton Children’s Hospital.

The Goals of ORSCP

  • Early identification of children with sickle cell disease and related hemoglobinopathies
  • Increase awareness, knowledge and skill level of Ohio’s health care professionals
  • Expand community awareness of the disorders

Hemoglobinopathies include sickle cell disease and sickle cell trait. These diseases can vary in the number and severity of symptoms. Some are life-threatening while others show no signs of the condition. Severe cases that are left untreated can cause a shortage of red blood cells, organ damage or other serious complications.

All babies born in Ohio have been tested for sickle cell traits since March of 1990. It is part of over 40 genetic disorders tested for in newborns.

It is important for parents to know if they have the disease or are a carrier. If both parents have the sickle cell trait there is a 25% chance with each pregnancy of having a baby born with sickle cell disease.

Doctors must let parents know if there are abnormal results, so the child is careful with family planning in the future. It is very important for couples to know their hemoglobin type before having children.

Common Complications of Sickle Cell

  • Pain crises episodes
  • Infection/fever
  • Acute chest syndrome
  • Anemia
  • Gallbladder issues
  • Splenic sequestration
  • Stroke
  • Priapism
  • Avascular necrosis (AVN)
  • Leg/ankle ulcers (mostly in adults)
  • Delayed growth and development
  • Psychosocial issues

The only cure known for the disease is a bone marrow transplant and is not available to many patients. The process is very expensive and very risky. It requires a matching bone marrow donor, usually a sibling. Most patients are treated their entire lives with drugs to reduce the effects of the disease and to help control the pain.

There are currently experimental cures using gene therapy being tried where no donor is needed.

Thank you, Cynthia L. Moon, for joining us to educate CNO about Sickle Cell Disease and the Ohio Sickle Cell Project at Dayton Children’s Hospital.

New Member Readings and Inductions

No readings nor inductions this week.

Happy Bucks

Member Reason
Casey Dixon (Guest)Yesterday was her child’s 8th birthday.
Judy DeMarcoHappy for all the friends they have added through the Centerville Noon Optimist Club.

Membership Anniversaries

Member Month Day Joined # Years
Larry England November 17 11/17/1994 16
Nancy Lehren November 17 11/17/1994 16
Julie Cochran November 19 11/19/2009 11
Beth Duncan November 20 11/20/2016 4
John Kalaman November 20 11/20/2016 4
Jon Fox November 20 11/20/2000 20
Marilyn Becht November 20 11/20/2016 4
Paula Kalaman November 20 11/20/2016 4
Christine Balsan November 21 11/21/2013 7
Dave Klein November 21 11/21/2013 7
Kristina Rainer November 21 11/21/2012 8
Martha Jackson November 21 11/21/2013 7
Bill DeFries November 23 11/23/2004 16

Birthdays

Member Birthday
Russell Hulbert November 19
Maureen Ruff November 20
Brendan Cunningham November 22
Jayne Weikel November 22
Mike Kistler November 23

CNO Donations 2013 through October 2020

Click this link to see a summary of the donations our club has made.

Over the past 53 years, we have donated over $2,000,000 to our youth community. In the past 6 years, we have donated nearly $712,000.

Sergeants at Arms

No Sergeants this week.

Welcome Guests!

Casey Dixon – Guest of Jeff Umbreit – WELCOME Casey!

Zoom Meeting This Week

We had another meeting using Zoom. We will continue our weekly meetings via computer, cell phone or tablet for at least the next several weeks. Please join us and keep inviting guests.

Who can Attend Zoom Meetings?

Any member of any type of Centerville Noon Optimist can attend Zoom meetings. CNO 2.0, St Leonard’s and CNO full members or CNO monthly members can ALL attend.

Guests are also welcome. Please invite guests and introduce them if you like. Just share the Zoom link with them for that week.

COVID-19 UPDATE

In keeping with social distancing requirements – our CNO Meetings have transitioned temporarily to a online format using ZOOM.

Club Member Joe Madden was inspired to rewrite The Optimist Creed – so we give you now – The Corona Creed -with apologies to Christian D. Larson, Author of The Optimist Creed.