ADVOCACY

This journey through this thing called life has caused me to pause and take inventory of what’s important and how God wants to use me. God has placed me on a journey of being to an advocate, one who speaks and writes on behalf of those who feel they are living with a disease that causes them to be removed from society at times and left to suffer in silence alone.

 Even though I live and some days really struggle with this disease I know tomorrow is not promised, so I try to do what I can do with what God has given me—a mouth to speak and a mind to put pen to paper. Advocating for Sickle Cell Disease is different when you live with the disease, I can tell my story better than anyone else can tell my story—and I can relate to those who suffer the same pain I feel. So, as I continue in this thing called life God has chosen me to speak for, make it plain, not sugar coat it, and tell it like it is about this disease that plagues over 100,000+ (mostly African Americans) in this country; however there are other races afflicted with this disease globally. So as you peruse this website keep in mind Sickle Cell is real, no matter the outward appearance of a person.

What exactly is Sickle Cell Disease? Normal red blood cells are round (kind of like a doughnut) and they are round, soft, and move smoothly through the veins. However, sickled cells are shaped like a fourth of the moon and they are hard and sticky which makes it hard for the red blood cells (that carry oxygen throughout the body) to travel through the veins causing excruciating pain. These misshaped blood cells are this way because of abnormal hemoglobin which is a protein found in the red blood cells. These painful episodes are referred to as pain crisis and the only remedy is providing IV fluids (to hydrate the patient), strong medications (narcotics or opiods), blood transfusions, some do breathing exercises, oxygen, heating pads, electric blankets and pain patches until the pain subsides. These painful episodes can sometimes be controlled at home but if the pain goes beyond the limitations of the medications a patient has at home, most times the pain crisis result in hospitalization. Every patient is different when it comes to the length of a hospital stay; anywhere from 3days to 1 month, again depending on the severity of the pain and other complications. Many people don’t realize that common complications include strokes, loss of sight and hearing, deterioration of the bones, spleen rupture, and a host of other things including complications from medications.

These are sickled blood cells and normal blood cells.  Normal blood cells carry oxygen throughout the body and move easily throughout the body because they are flexible and they live for 120 days.  However, sickled cells are shaped like a 1/4 of a moon and are sticky and hard causing traffic jams in the veins and arteries preventing oxygen to circulate through the body and they only last about 14 days.

These are sickled blood cells and normal blood cells.  Normal blood cells carry oxygen throughout the body and move easily throughout the body because they are flexible and they live for 120 days.  However, sickled cells are shaped like a 1/4 of a moon and are sticky and hard causing traffic jams in the veins and arteries preventing oxygen to circulate through the body and they only last about 14 days.

The free flow of the normal blood cells and how the sickled cells cause traffic jams in the veins

The free flow of the normal blood cells and how the sickled cells cause traffic jams in the veins

Contact me to set up a blood drive at your next event.  Many do not know that when an African American needs blood, the donated blood most times needs to come from someone with the same DNA makeup as yourself.  So in layman's terms, black people need the blood from other black people.  I've partnered with Life South Community Blood Centers as a Sickle Cell hero and African American Spokesperson to encourage the African American community to give blood and become donors for life.

The Resolution authored by tina Kay has been passed!

Tina Kay had an opportunity to author a resolution for the National NAACP to make SCD a national health (priority) initiative.  The resolution was approved on the state level then it was evaluated by the NAACP National Resolution Committee where Tina Kay's resolution was combined with another resolution to make 1 resolution to be presented before the delegates at the National NAACP Convention in July 2015 in Philadelphia, PA.  The resolution was approved by the delegates and now has to go before the Board of Directors.  To ensure the programing, education, and prevention issues along with treatment of patients is not lost in the shuffle both authors spoke with leaders from the SC Community and it was decided to draw up a suggested plan of action to be presented to the NAACP Board of Directors as well as the National NAACP Health Coordinator to not only offer a suggestion for the plan of action but to use those (trained advocates, concerned parents, and well versed doctors) in the SC Community to do the work!  We still have much work to do before the National NAACP Board of Directors meet October 2015.

FDA Panel Discussion in Washington, DC

On February 7, 2014 I sat on a FDA panel in Washington, DC to represent sickle cell patients.  I am on the 2nd panel, listen all the way through because I speak several times.  Click on the link below to see and hear the panelist including me!

https://collaboration.fda.gov/p3fcverdb3o/?launcher=false&fcsContent=true&pbMode=normal

“Are you living or are you existing?” asks Tina Kay. This is one of her favorite quotes because Sickle Cell Disease is attacking her body and mind. Many days she feels she is just here existing. She feels that the disease is like a terrorist in her body waging a war and she has no defense to stop it. Thankfully, she has blood donors. The most common treatment for patients with complications from Sickle Cell is blood transfusions. Tina hopes our community will put this disease on the radar to find a cure. “Life is so precious and taken for granted until something in life causes you to pause and take account of what is really important,” says Tina.

Visit  http://www.lifesouth.org/donate/patient-stories/

Bone marrow transplants have cured a few hundred children living with sickle cell disease.  Unfortunately, the bone marrow registry consists of 80-85% caucations and 5-8% African Americans.  The bone marrow match must be 100%, or the transplant can be fatal.  With the DNA makeup of the bone marrow leaving no room for error the 100% match requires that more African Americans must begin to sign up for the registry.  Ask me (Tina Kay) how you can help!  Be The Match is the national bone marrow registry and at your next event I can set up a table to encourage more African Americans to register for Be The Match.

Don't wait until death is knocking at your front door!  You can have a huge impact on someone's life by saving a life by donating blood and registering for the bone marrow registry.

Me and my Nina on the front of a magazine during Sickle Cell Awareness Month

Me and my Nina on the front of a magazine during Sickle Cell Awareness Month