Saturday, September 19, 2015

Do You Really Know About Sickle Cell Disease? (Part 2)


The origin of the mutation that led to the sickle-cell gene was initially thought to be in the Arabian Peninsula, spreading to Asia and Africa. It is now known, from evaluation of chromosome structures, that there have been at least four independent mutational events, three in Africa and a fourth in either Saudi Arabia or central India. These independent events occurred between 3,000 and 6,000 generations ago, approximately 70-150,000 years.  So this just goes to show you that sickle cell disease (SCD) has been around for a very long time, since the 1600’s, and behooves me that the research, therapies, or even a cure has not been developed or discovered for brown people who are affected by this disease.  It is the only disease where the body mutated the red blood cells to preserve the body from malaria in the areas where SCD is known to originate.

The transatlantic slave trade was largely responsible for introducing the sickle cell gene into the Americas and the Caribbean. However, sickle cell disease had already spread from Africa to Southern Europe by the time of the slave trade, so it is present in Portuguese, Spaniards, French Corsicans, Sardinians, and Sicilians, mainland Italians, Greeks, Turks and Cypriots. Sickle cell disease appears in most of the near and Middle East countries including Lebanon, Israel, Saudi Arabia, Kuwait and Yemen.  The condition has also been reported in India and Sri Lanka. SCD is an international health problem and truly a global challenge.

The majority of sickle cell cases occur among African Americans who are either from Africa or can trace their lineage back to Africa. Other populations that the sickle cell gene is common in are located in the Mediterranean, Middle East, and India areas. These geographic locations are also home to the disease of malaria. It is believed that sickle cell anemia originated in these locations in response to malaria. People infected with sickle cell anemia are less vulnerable to malaria. This has caused an environment where people with the sickle cell disease survived due to less mortality from malaria. As the slave trade began, blacks that were transported to areas devoid of malaria no longer had a use for the sickle cell disease and so it became nothing but a debilitating hindrance.

There is a collection of clinical findings that was unknown until the explanation of the sickle cells in 1904 by the Chicago cardiologist and professor of medicine James B. Herrick (1861-1954).  Herrick’s intern Ernest Edward Irons (1877-1959) found "peculiar elongated and sickle-shaped" cells in the blood of Walter Clement Noel, a 20-year-old first-year dental student from Grenada, after Noel was admitted to the Chicago Presbyterian Hospital in December 1904 because he suffered from anemia.

It was not Noel’s only hospital stay, he was readmitted several times over the next three years due to what the doctors assumed to be "muscular rheumatism" and "bilious attacks". Noel completed his studies to become a dentist and returned to the capital of Grenada (St. George's) to practice dentistry. He died of pneumonia (which is a common reason of death for those living with SCD today) in 1916 and is buried in the Catholic cemetery at Sauteurs in the north of Grenada.

The disease was named "sickle-cell anemia" by Vernon Mason in 1922. However, some elements of the disease had been recognized earlier: A paper in the ''Southern Journal of Medical Pharmacology'' in 1846 described the absence of a spleen in the autopsy of a runaway slave.  This is common for most who have the SS hemoglobin, for the spleen to shrivel up like a raisin and is non-functional from birth.  However, those living with SC hemoglobin like myself the spleen is oversized and non-functional and will continue growing in the body until it ruptures.  I’ve experienced my spleen rupturing!  It grew to the point that it was beginning to move other organs around it, pushing to make more room for itself.  My spleen was removed and it was white and gray in color while the other organs around it were red and functioning properly.  It was the size of a premature baby, when a normal healthy spleen should be red like the organs around it and the size of a fist.

The African medical literature reported this condition in the 1870s, when it was known locally as ''ogbanjes'' ("children who come and go") because of the very high infant mortality rate caused by this condition. A history of the condition tracked reports back to 1670 in one Ghanaian family. Also, the practice of using tar soap to cover blemishes caused by sickle-cell sores was prevalent in the black community.

Linus Pauling and colleagues were the first, in 1949, to demonstrate that sickle-cell disease occurs as a result of an abnormality in the hemoglobin molecule. This was the first time a genetic disease was linked to a mutation of a specific protein, a milestone in the history of molecular biology, and it was published in their paper "Sickle Cell Anemia".

~By Tina Kay 

Sickle Cell Awareness Month 2015 (Part 1)


Sickle Cell Awareness month is September every year…and every year I share with you facts about SCD, information that will help people living with SCD, and how you can make a difference….but the most important thing I thought I could share with you, by not being transparent and sharing with you the good, bad, and real ugly with you, my FB family….Sometimes I think I’m simply wasting my time on this crusade to educate the public while trying to make life a little easier and worth living for people like me, who live with SCD….We need you (the person reading this) to do something this year!  Not another walk, run, gala, dare, or anything that is just fluff….In days to come I will share how you can help and give  lots of information about a disease that does not get much attention!  Watch out for “Painting for a Purpose Parties” and local high schools will compete against each other in the Birmingham, AL area, where you can find art work created by those living with SCD in an art gallery near you and how you can save lives and give people like me a better quality of life….You can be the change maker with it costing you very little to nothing but your time.  It’s time for a change and stop waiting for someone else to break the cycle and cause a change.


: In its simplest terms, the red blood cell is like a car driving throughout the body & every part of your body needs the oxygen that is supplied by the red blood cell.  So think of a regular red blood cell as a brand new shiny car that’s never been driven and is ready to take the road for an across the country trip (its shaped like a Krispy Kreme doughnut that’s nice an soft), all gassed up and ready to roll.  On the other hand you have a sickled red blood cell as an old lemon of a car (a Krispy Kreme doughnut that’s been sitting in the box for about a week, it’s hard, and someone has taken a bite out of it and put it back into the box) the air doesn’t work, it makes noises, cuts off whenever if feels like it causing traffic jams, parts are constantly coming off and just not very safe to drive)……A regular red blood cell has a life of 120 days & a sickled red blood cell will live in the body for 10-20 days at best…the job of the red blood cell while its taking this cross body (or country) drive is to drop off oxygen and pick up carbon dioxide and other bad gases that need to be removed from the body….The red blood cell travels through arteries & veins to get the job done and provide the organs, brain, tissue, bones, and even places in the body we don’t even think about with the oxygen needed to continue to do its job as a body…..However, the regular red blood cell has no problems getting through tight spaces because it was designed to be soft, squishy, and easy to maneuver throughout the body with no problems…..but the sickled cell isn’t even fit for the roads inside our bodies b/c they are hard, break easily, and cause traffic jams anywhere oxygen is needed within the body which is everywhere…..If the body does not have or get oxygen supplied throughout the body it dies (and everything needs red blood cells in the body to function properly).  So here we have a brand new cell (the shiny car) and a broken, damaged, and causing traffic jams throughout the body and can just barely make it to the state line on a cross country (body) trip.  The percentage of sickled cells found inside someone who lives with Sickle Cell Disease is extremely high (60-95%).  What are the chances that someone living with SCD living a long and awesome quality of life?

~Tina Kay    

Monday, March 30, 2015

Real Talk!


A girl like me needs blood every now and then, not just any kind of blood; I need donated blood!  It’s not because I did anything to cause myself to need blood I just happened to be born with sickle cell disease.  One of the only successful therapies for people living with sickle cell disease is blood transfusion or a blood exchange to help sicklers live a better quality of life, as well as a longer life!

 

Most normal red blood cells found in someone without SCD have red blood cells that last 120 days and work as a vehicle taking oxygen throughout the body; to the organs, tissue, bones, and brain.  It also has the job of picking up carbon dioxide and other bad gases to remove them from the body.  So think of blood as a vehicle with red blood cells sitting on the front and back seats being dropped off at different points throughout the body.  While dropping off the blood the gases are being thrown into the trunk to take it away from the body and discard.  Well those living with SCD  have red blood cells that last in the body for only 14 days therefore, the body is not getting the oxygen needed that is found in blood.  The vehicle in the body of someone living with SCD, the red blood cells, can be thought of as an old raggedy lemon of a car that will break down at any time.  So the blood does not get to all of the parts of the body and where there is no oxygen, there is death.  So, for a better quality of life and a longer life it is imperative that those living with SCD like me receive blood donated from people who are gracious enough to share their blood with people like me!

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         Yes, a Girl like me needs blood every now and then; your blood!  When living with SCD, it is common to get blood transfusions and exchanges on a regular basis!  However, the best blood for an African American is the blood donated by another African Americans.  This holds true because genetically it is best to receive blood from someone whose genes align with one another.  This helps to prevent rejection and adverse reaction from a blood transfusion or exchange.  Unfortunately, only 37% of the population is eligible to donate blood, 10% actually donate and of that 10%, less than 1% are African Americans.

 

Blood is not only needed by those living with SCD but anybody!  Statistics say 1 in 7 people who go to the hospital for help will need blood.  Every 2-4 seconds someone in the U.S. needs blood.  More than 41,000 people need blood every day.  Without oxygen rich blood, the body does not get the oxygen that’s needed to survive.  And that is with any living thing, oxygen is needed. 

 

I am so grateful for the gracious people during my lifetime who have given a piece of themselves so I can live a longer life and have a better quality of life.  You may only know and see me as a pretty face, made up with makeup, and I love jewelry, clothes & shoes; but my appearance is about the only thing I can control in this life! When I awake each morning I count it as another blessing to do something for somebody else, the way others have given to me.  You see I was born with Sickle Cell Disease, not because I did anything, my parents had no clue in the 70's that they both had the trait that caused me to live with this awful disease.  SCD feels like a war is going on inside my body and I can't stop it!  So here I am, in pain most every day of my life, asking you who may be reading this to donate blood or donate funds....You can make a difference and you have the opportunity to save a life if only you would donate from the heart.  Help me and organizations like First United Community Foundation, the Alabama NAACP Conference, and Summit Media get 50,000 African Americans donate blood by December 31, 2015.  This campaign comes as a result of the 50 year anniversary of “Bloody Sunday”.  So many bled, were beaten, and even died for the rights we often take for granted these days but I want to encourage you to give blood every 60 days if you can starting April 18, 2015 at the kick-off event for the campaign “Arts For Life Festival” in Avondale Park from 10am-6pm.  For more information visit www.tinakay.net, Arts For Life page on Facebook, and Operation Push For Blood page on Facebook. Donate any amount by going to http://fundrazr.com/campaigns/8xNY8

By Tina Kay, NAACP Health Coordinator for Alabama

Friday, March 27, 2015

Donate Blood


Operation Push For Blood was created by Tina Kay because she was born with an inherited blood disorder (sickle cell disease) that has no cure and she needs blood often.  After needing blood and there was none available for 4 days she decided to make this one of her platforms, blood donation.   Many people don't realize that genetically it’s best that people who belong to the same ethnic group donate blood to one another to help decrease the number of complications that could possibly com along with using blood from another ethnic group.  In layman’s terms, it is best to receive blood from someone in your race (because more times than not there is a genetic match).  With blood transfusions and blood exchanges being common therapies for people like Tina Kay living with SCD, more African American blood donors are needed!  Tina Kay works closely with Life South Community Blood Centers who provide Alabama with approximately 95% of the blood in Alabama, because their specialty is blood and nothing else.  She's an amazing person according to Life South check it out http://www.lifesouth.org/donate/patient-stories/.

Tina has teamed up with First United Community Foundation (501c3), the NAACP (Alabama Conference) & Summit Media Group to get 50,000 African Americans to donate blood by December 31, 2015.  This campaign is in remembrance of our forefathers who shed blood and died for our rights during 'Bloody Sunday', so we are asking today’s generation to donate blood to save the lives of those who look like you.  However, if you cannot donate blood you can donate funds to help the blood donation campaign to help us reach the goal of 50,000 African Americans donating blood by the end of this year, however, donating both ways would be ideal!  Are you interested in entering your organization into the kick off festival to compete against other adult (civic, social, and professional) organizations?  All you have to do is email oppush4blood@gmail.com to enter your organization.  We as a people need to become blood donors for the remainder of your life, so that you can save many lives!

It is sad but true that the percentage of blood donated by black people is not filling the need, meaning more black people need to donate blood.  So, Tina Kay created a movement to educate, engage, and encourage blood donation in her community.  Most times Tina will use her own money to host blood drives in the form of competitions, challenges, festivals, events, and town hall forums to help increase the amount of donated blood.  She works with schools, churches, non-profits, organizations, and events to set up blood drives.  She really needs your help!  Studies have found that 37% of the population can donate blood but only 10% donate and less than 1% of that 10% are African Americans, if you are reading this and you do not donate blood on a regular basis now is your chance to make a difference by donating a kind contribution by visiting www.fundrazr.com (Donate Blood or Donate Funds!)http://fundrazr.com/campaigns/8xNY8http://fundrazr.com/campaigns/8xNY8.

Did you know every 2 seconds someone in the US needs blood, 1in 7 people who are admitted into the hospital will need blood, 1 blood donation can save the lives of 3 people, if someone started giving blood at the age of 17 years old until they were 76 years old, thousands of lives would be saved, and 4.5 million people will need blood every year.  In order to save lives and provide a better quality of life for others needing blood we need your generous monetary donation!  You never know, it could be your child or you in need of blood one day!

The kick off competitive festival for this campaign will begin Saturday, April 18, 2015 from 10am-6pm in Avondale Park (Birmingham, AL) see www.tinakay.net, Operation Push For Blood on Facebook, or Arts For Life Festival also on Facebook.  If you would like to enter your group or high school into the kick off festival (blood donation) competition or if you would like to host a blood drive please email oppush4blood@gmail.com
By Tina Kay  

Monday, August 25, 2014

Statistics Say!


Statistics show that by the end of our lives we would have spent six months at stoplights, eight months opening junk mail, a year and a half looking for lost stuff, and get this, five years standing in lines.  All I can say is, “Wow”, what a colossal waste of time, talent, and resources.  As African Americans we also spend more money than any other race on hair and hair products, clothing and shoes, finger nails and eyelashes, and lastly cars.  All of which have no real value that can be passed along to your child.  We don’t apply ourselves in the areas where we have great talents but we occupy prisons in quite alarming rates.  Is it that we simply don’t know?  Or maybe we know and we choose to exist on earth not leaving any type of impression on society nor an inheritance for our children and their children.  My philosophy is ‘if you know better, then maybe you will do better.  But a pastor friend says that, “we are simply a lazy race of people.”

At some point, someone has to say, ‘I am breaking the generational curse that’s been on my family for years’.  Somebody has to wake up one day and say ‘this dish my family has been eating from for generations will stop today with me’, by breaking the plate and getting up from the table of wasteful thinking, useless time spent, and misuse of genius expertise.  We must think more of ourselves, realizing there is power within that caused us to be African kings and queens, survivors of slavery, and victorious Civil Rights warriors.  But don’t get it twisted the struggle is far from being over.  In order to break the cycle we must come to understand who we were (our history and our forefathers’ history), who we are today, and the possible destiny that gleans from us for tomorrow.  The only way we will know how to break the cycles that have been purposely imposed upon us causing us to remain enslaved is to realize your self-worth.  Can you believe that many think we will never be any more than what we are, who we are, and where we are simply because we don’t care about ourselves nor do we care about someone else that looks like me and you?  Pay attention, there are mental gymnastics still being played on us, so we will forget how to move past this place in order to be an awesome race of people who not only know the statistics, but also understand we have the power within that will cause us to make a change.

 It starts at home!  What are you doing with your time, talents, and resources?  Are you sitting in front of the television doing nothing day after day?  What do you enjoy doing? How can you use your talents and time to become your own boss by starting your own business?  If you are going to hustle for somebody, you may as well hustle for you, your family, and something that you can call your own.  We are no longer slaves but we sure do act as if we have no freedom or liberty to make better choices for our lives.  However, more times than not we fall into this hole forgetting our history and the legacy left behind for us by those who fought and died so that we can call ourselves free.  Are we making  our forefathers or anyone for that matter proud, or are we just sitting around waiting for the time to pass by, letting the legacies put into place for us so many years ago just slip away?

It doesn’t matter what the statistics say, we’ve overcome gargantuan issues in the past and we can still overcome adversities today. How you may ask?  We must start one person at a time, one household at a time, one neighborhood at a time, one community at a time with a new mindset; that my life is worth more to me and my children than the frivolous things in life that have no value.  But it starts right now, at this very moment in time, today with you!  Let’s get it right and do for ourselves what we want others to do for us.  It’s time out for foolishness and it is time for creating legacies that will live on with our grandchildren and their grandchildren.  Let’s change those statistics and the way we operate as well as our mind set by investing in ourselves.

By Tina Kay, www.tinakay.net  National Sickle Cell Advocate, Speaker, and Patient, and the NAACP Health Coordinator for Alabama

History In The Making!


 
I have some awesome news to share! September is Sickle Cell Awareness month all over the country!  This year the Civil Rights Institute in Birmingham, AL has agreed to dedicate a gallery to Sickle Cell Disease (SCD) and it will be the first ever art exhibit, along with a video of those living with the disease to be placed in the Institute.  The video will be shown during the opening reception that will also play and loop in the gallery for the life of the exhibit; along with informational panels about SCD.  Just to give you a little history Birmingham, AL is the birthplace, cradle, and home of the Civil Rights Movement and we celebrated the movement’s 50th Anniversary last year.  Well, the Civil Rights Institute is across the street from where the bombing of the 16th Street Baptist Church and also across the street from the area (now Kelly Ingram Park) where dogs attacked black protestors and water hoses were sprayed by firemen onto black protestors.  So, having an art exhibit (with artwork created by the sickle cell community) is huge in my eyes!  People come from all over the world to take a tour of the Civil Rights Institute, Sixteenth Street Baptist Church, and Kelly Ingram Park.  I say all of this because it just remarkable that artwork will be placed in a gallery from people living with SCD who live all over the country and the best part is it will hang through December.

 
Please mark your calendar to attend the opening of the exhibit along with a program and reception that will take place on September 4, 2014 at 6pm at the Civil Rights Institute and it will kick off the events in Birmingham, AL for Sickle Cell Awareness Month.  The works will be a depiction of what it feels like to live with SCD on a daily basis.  Sickle Cell Disease is an often forgotten brown people’s disease, leaving those who live it to suffer in silence.  This exhibit will be an eye opener, a mind blower, and give the public some indication of how serious this disease affects people of color.  Those living with SCD often do not have a voice sitting around the tables of the large African American social, political, or civic organizations; when this disease alters the lives of fellow brothers and sisters.  Why is SCD not the topic of conversation when it comes to which health issues or diseases will be the focus health initiative for these organizations in which we belong?  The Civil Rights Institute has decided that SCD needs attention and needs to be dealt with on a global level.  For the Civil Rights Institute to humbly accept the offer by displaying this disease in its rawest form, the arts, will show that this disease too often interrupts the lives of those living with SCD. 

 
Birmingham, AL has accepted the torch to carry for the country on its back in the past as it pertains to civil rights, just as the Civil Rights Institute has decided to accept the torch for the first leg of this race, as those living with SCD still fight for civil rights.  I salute the Civil Rights Institute and pray others will humbly help to run this race with and for those living with Sickle Cell Disease.  Many of us living with SCD may lose some daily battles with SCD, but we refuse to be defeated by the war that rages within!   So I challenge you to run this race with me and so many like me who live with SCD, and encourage others to place this disease at the top of the agenda during the month of September because there is power in numbers. 

 
No, I don’t want you to dump ice water over your head, eat some ridiculous food, put on some red lipstick, take a walk, attend a gala, or run a marathon.  I would like you to become educated about a disease that has been put on the back burner for far too long!  I challenge you and will continue to challenge you to help those of us living with the disease by making it priority this year and for years to come; by giving this disease some of your energy, time, and dollars so that those of us living with SCD will stop suffering in silence and crying in the dark!  I hold this torch today in Birmingham, AL as a black woman who has lived 40 years with a disease that no one seems to care about until it’s time for a walk or put on a pretty dress or tuxedo for a gala; that helps me in no way!  I challenge you to help me hold up this torch so the flame will continue to burn for all to see that people who look like me and you with brown skin have been suffering all alone for too long.  We need you to make us a priority, the people living with the disease!  Are you up for the challenge?  I don’t go away easily, so I will hold this torch hoping and praying for people with compassion will help me as I push SCD to the forefront of diseases in serious need of help.

 
Also mark your calendar for September 18, 2014 at 6pm to join us for an evening of entertainment, networking, and sickle cell awareness at Villagio's Restaurant in Ross Bridge.  Enjoy tunes, including her new single "I'm Done" by Sharon Collins Adley, Comedian Bennie Mac, and spoken word artist yours truly, Tina Kay.  Tickets can be purchased from Eventbrite or at the door.  Lastly, we are so excited about the Second Annual "Arts For Life" Festival in Avondale Park where several organizations and high schools compete to determine who can donate the most blood, register the most people for the national bone marrow registry and donate funds.  We are so excited about this fun, family friendly festival for the entire family and community as all art forms take the stage during the day as we save lives.  Mark your calendars for September 20, 2014 from 11am-6pm.  It’s not too late to enter your organization into the competition nor is it too late to be a sponsor.  Please email me at tkay2006@gmail.com for more information regarding this article or any of the events.  Thanks in advance for your support!

By Tina Kay, contact@tinakay.net or tkay2006@gmail.com, www.tinakay.net

Thursday, July 3, 2014

Do Your Thang!


We all have hopes and dreams and we have probably mapped out how to get make this thing we want so dearly come to fruition.  We should all learn before starting out on this goal not to be so rigid in your planning.  Don’t hold on so tightly to this dream of yours.  When you have a goal in mind if it is meant to be things will fall into place so easily and there want be any struggle to make things happen.  You can say getting to your goal is like riding on a small boat (with no engine and no paddles) down a river, just allowing the current to take you to where you need to go.  It may take a few sidetracks here and there but it always comes back to the river.  Those sidetracks may be lessons in life you need to learn in order to get the goal you have in mind. Make sure your plans have a little room for change, don’t hold on to your dream too hard—leave a little leeway for change (those would be the sidetracks on the river of life).  God will place the people and resources you need in your path to make it happen.  Recently, I’ve been working on a website and a spoke with a man who told me he would charge me hundreds of dollars for a service.  I did not grumble or complain, I just tried to figure out how to add this service into my financial scheme.  Then a friend put me in contact with someone and this guy tells me I will do the service for you (better quality) at no charge.  You see what I mean, I went with the flow of things and God opened the door I was to go through for a part of my business to get done.  Don’t be afraid to allow the river of life take you in the direction that feels comfortable and right, even if you don’t know where it is going; hold on to your dream but not with a firm grip—lighten up!

While on this river of life don’t forget to thank God along the way for protecting you from people who mean you no good, schemes, and lies.  If things are not going well and it seems like you are having to force this goal to happen, maybe you need to back away and ask God if this is the right season for this to take place or if it should take place at all.  If you find that every time you try to make some head way with your goal and you run into difficulties and you are forcing things to happen, you may need to rethink it because at this point you are going against the current of the river of life.  It’s okay if you put it down until your season is right or it may not be the right goal for you to have anyway.

We all have goals and dreams and want to do our thing but make sure in your doing you are in God’s plan not your own.  He is faithful and if you are lining up with Him, it will surely come to pass.  Today, loosen your grip on your goals and learn to go with God’s flow.

By Tina Kay, www.tinakay.net, If you are looking for a speaker at your next event please contact Tina Kay at tkay2006@gmail.com