Lecture: Sickle Cell Awareness

Instructor:

Ediomi Utuk, CEO of Converse 4 A Cure

 
Greetings to all the fabulous students and readers of Determined to Educate, Inc. I am Ediomi Utuk, CEO and Founder of Converse 4 a Cure (C4C). C4C is a non-profit organization on a mission to raise awareness about Sickle Cell Disease (SCD) through fun, fashion, and facts. As an individual living with SCD I am surprised by the mass number of people who are not well educated about the disease and who it affects.  So to gain more insight about the disease, take some time to indulge in the brief Q&A session below. Of course feel free to ask me any questions.

*Note: These are a few real-life questions I have been asked and/or rumors I have heard.

Q: If I had/have relations with somebody who has SCD, can I catch it?
A: Not possible. Sickle Cell Disease is an inherited blood disorder and not an STD.  One must be born with the disease, inheriting one Sickle Cell gene from his/her mother and one from his/her father.

Q: When I learned about SCD in school they told me it was a “Black” person’s disease. Is that true?
A: No. SCD affect millions of people throughout the world particularly those with ancestry from: Africa, South or Central America (especially Panama), Caribbean islands, Mediterranean countries (such as Turkey, Greece, and Italy), India, and Saudi Arabia.

Q: What occurs biologically in one’s body when one is having a Sickle Cell crisis?
A: During a crisis, a person’s red blood cells go from being soft and round like marshmallows to rigid, sticky, more fragile and sickle-shaped.  This occurs because those with SCD have abnormal hemoglobin “S” which causes the cells to loose their oxygen and clump together. In turn, the cells have difficulty passing through small blood vessels thus depriving the tissue of oxygen and causing excruciating pain. These painful episodes are called “crises” and they can occur anywhere there is blood.

Q: What is hemoglobin?
A: Hemoglobin is the main substance in the red blood cells that help carry the oxygen from the lungs to every tissue in the body.  There are two types of hemoglobin: hemoglobin A (normal) and hemoglobin S (abnormal). Normal red blood cells live for about 120 days while red blood cells with S hemoglobin live for about only 16 days.

Q: Someone I know has the Sickle Cell trait. What does that mean?
A: Sickle Cell trait means that they have inherited one normal hemoglobin gene (A) and one sickle cell gene (S) Generally, they will not suffer from any of the symptoms like shortness of breath, paleness, jaundice, blindness, increased vulnerability to infection, pain crises or strokes. IMPORTANT: If and when they decide to have children it is important that he/she choose their partner wisely. If they have offspring with someone who also has the trait there is a 25% chance the child will have the disease. 25% may seem small however the consequences are huge. Be responsible and think about the future.

* SEE CHART BELOW

Living with SCD is challenging and the affects of this disease vary from person to person.  Because I live with the disease I find it my duty to keep the community well-informed. Excitedly, Converse 4 a Cure will be having its kick-off event on September 19, 2009 at Seed Gallery 239 Washington St. Newark, NJ 07102 from 7p-11p.  This is the ultimate event for all my “Chuck” lovers.  Come out and enjoy the presence of NJ’s most sought after artists and the auction of their exclusively designed Converse sneakers benefiting sickle cell awareness and research. With live performances by NJ most gifted and graced artists.

The organizations website, http://www.converse4acure.org, is currently under construction however visit there often to see the progress being made.  This will be the ultimate haven to stay informed about SCD, stay in the loop of our latest events, and meet the phenomenal artists, performers and businesses that support the cause!

~Peace

Biography:

As a rising leader in philanthropy, Ediomi Utuk has garnered a deep appreciation for educating and empowering through the arts.  Seasoned producer of fashion and art events, Ediomi Utuk has honed the ability of employing the arts to raise awareness and with a life-long passion for sickle cell anemia and how it has effected the lives of so many people including herself, Ediomi, continues to employ the arts raising awareness through Converse for Cure (C4C) -a non-profit organization committed to raising sickle cell awareness through the arts.

As the founder of Converse for a Cure Ediomi Utuk is leading by example. Never taking a day for granted she approaches life with an optimistic attitude, knowing she is “different” living with sickle cell and defying odds. Growing up with sickle cell Ediomi faced many obstacles nevertheless; she overcame each one day by day - demonstrating that sickle cell disease can be defeated. Converse for a Cure translates Ediomi Utuk’s very existence educating and empowering - providing an opportunity for illustrious artistic groups to illustrate the beauty of life and the art of living with sickle cell anemia undefeated.

With determination and faith, anyone can overcome a single obstacle and with so many people who face sickle cell as an obstacle to leading a fulfilled life, Ediomi Utuk promises to lend a helping hand to revolutionize the world’s battle with sickle cell disease.

Please send your comments and questions to Ediomi Utuk at .(JavaScript must be enabled to view this email address)