Sickle Cell Awareness 2

Common questions asked of me are, “How do you get sickle cell disease”, “How long have you had sickle cell disease”, “Are you sure you have sickle cell disease, because you don’t look like it”.  As sure is the day is long and the sun comes up, believe me my body lets me know every day I live with sickle cell disease. 

  Sickle cell disease is an inherited blood condition that is not contagious.  The genes that are passed on from both parents to child determines what type of sickle cell disease the child will or will not inherit.  There are several types of sickle cell disease, but the most common are:  Hemoglobin SS, Hemoglobin SC, Thalasemia, and sickle cell trait. 
  It’s a matter of probability, chance, or a roll of the dice!  If both parents have the trait, they have 25% chance (1 out of 4) of having a baby with sickle cell disease.  If one parent has sickle cell disease and the other parent has the trait, they have a 50% chance (1 out of 2) of having a baby with Sickle Cell Disease.  If one parent has the disease and the other has no trait, each of their babies will have a trait.  When one parent has the trait and the other parent has no trait they have 50% chance (1 out of 2) of having a baby with Sickle Cell Trait and 50% chance of having a baby with no trait.  However, in all of the scenarios each time they get pregnant, they have the same chance, meaning the probability remains the same.
  Most states now perform a simple blood test called the hemoglobin electrophoresis when babies are born.  This particular test will tell the parents if the baby is a carrier of the trait or the disease.  The test also informs the doctor and parents if the baby has any other hemoglobin.  Believe it or not everyone who goes outside and tans brown should have this test done on them at least once in their lifetime by asking your doctor to perform it, or go to any Sickle Cell Foundation.  If you are already pregnant and you’ve never been tested for sickle cell disease you should ask your doctor to perform a test called amniocentesis to determine if your baby will be at risk of having sickle cell disease.  Most doctors perform this test on soon to be mothers if they fall into the category of possibly having sickle cell disease. 
  When children living with SCD become adults it is a hard transition because the pediatricians are more hands on with SCD patients.  The transition can sometimes difficult because it is hard to find a hematologist to build a relationship with immediately because the pediatrician has known the young adult their entire life.  Only recently have pediatricians insisted on sicklers finding a new SCD doctor (hematologist).
  This year we’ve decided to help someone who lives with SCD instead of moving forward with a red carpet event.  A 35 year old young man who is the father to three; he is a classroom parent on off days, he goes on just about all of his children’s field trips, helps with homework, and supports them all in extra curricular activities and sports.  He is a protective brother, helpful son, awesome friend to many because he never meets a stranger, and a giver when he has nothing for himself (financially, mentally, spiritually, nor physically).  He has worked three jobs at one time to make ends meet.  It has been a struggle for him as he tries to work through the pain to make ends meet financially.  He was admitted into the hospital over three months ago and has not seen home since being admitted.  Many don’t understand that it is hard to keep a job when the pain you feel is like glass traveling through the veins.  He has endured many complications due to SCD including 2 strokes, many blood transfusions, loss of hearing, almost losing his eye sight, and infections he possibly contracted by working in the medical field.  This long stay in the hospital has left him with no ability to walk, he has lost 50 pounds or more.  At 6’8” he is known to most as the gentle giant, always making others laugh, never wanting anyone to feel down and sad.  His joking starts before he breaks down in tears because of the pain that many sicklers describe as glass traveling through the veins.  As I sit in his hospital room he cannot even make it out of bed on his own.  He has not seen his home, that needs so many repairs, in over 3 months because of this long stay in the hospital.
  As I thought about September being Sickle Cell Awareness month I decided to possibly cancel an event and pour as many resources as possible into this young man’s 2 bedroom home so that he can maneuver in his home upon his return.  It amazed me how many people love him so much to come together on September 29, 2012 to try to do an “Extreme Home Make Over” as best as we could.  Even a contractor, Brian of AA Painting and Contracting, SYG Social & Savings Club, and so many friends who came together to make this young man’s who may eventually walk on a cane, handicap friendly. We decided to work with very little to make a difference that will be so huge for  for him, his children and his best friend (his dog).   On September 29, 2012 we spent the first day making crucial repairs the focus.  Brian of AA Painting and Contracting purchased and provided many of the building materials and some appliances as well.  We know this will be a 5-7 day project with so many more things that need to be done.  We hope on the day of his return we can say “Move That Bus!" 

If you would like to help, please email Tina Kay at contact@tinakay.net.  If you are looking for someone to speak at your next event or set up a blood drive please email Tina Kay.  By, Tina Kay Hughes www.tinakay.net  Donations can always be made on the website also.

Sickle Cell Awareness Month

In recent years, Sickle Cell Disease Awareness Month rolls around and I become extremely happy because it is one of two times out of the year that I can shout as far, loud, and wide as I possibly can to educate the masses about sickle cell disease. Yes! September is Sickle Cell Awareness month! However, if you follow my column you would know that I talk about sickle cell disease whenever I’m given the opportunity, because I live with the disease myself. In this article I will share a few facts. Sickle cell disease is not only an African American disease, nor is it an African disease. There are many other nationalities and races that have sickle cell disease including: Portuguese, Spanish, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. Sickle cell disease also appears in Middle Eastern countries and Asia. The easiest way to understand it is anyone who tans brown when they go outside has the potential to have sickle cell disease in their ancestry. Believe it or not sickle cell disease actually saved the lives of many in the 1600’s of those living in tropical areas of the world. There was a bad outbreak of malaria and those living with the sickle cell gene did not die because the gene that hurts so many today actually saved the lives of those stricken with malaria. So, even today if there is an outbreak of malaria those living with the sickle cell hemoglobin will be more apt to survive the outbreak. Many don’t understand, including some doctors and nurses; how someone with no outward tell tell signs can be in so much pain. There are still many in the health community who do not know how to treat this disease. This does not surprise me! For many years the statistics said that people living with sickle cell disease would not live pass 20, 30, and surely not 40 years. I am happy to say that places like UAB, right here in our community are making great strides to come up with a cure. With so much technology in urban area hospitals, sicklers are living well pass 50 years old. However, more education and exposure is needed in rural areas where doctors still don’t have much exposure to this disease. So, I know you are wondering what are some of the complications if someone with sickle cell disease is having a pain episode? These are some but not all, of the complications: red bloods cells shaped like a banana creating traffic jam in the blood vessels making it impossible for red bloods to take oxygen that is needed throughout the body. Strokes, infections, leg ulcers, bone damage, jaundice, bone marrow stops making red blood cells, kidney damage, acute chest syndrome, spleen damage, liver damage, loss of hearing and eye sight, and low red blood count are some of the things that can possibly happen. I’ve listed several things that can happen to the body when it is not receiving the needed oxygen. I’ve heard someone with sickle cell disease describe the pain that we feel as broken glass traveling through the veins. Sickle cell disease has no face or identity that can be seen on the outside of any sicklers’ body. I call it a terrorist in my body that invaded my body with no questions asked. This disease is not contagious; it is genetic in form and passed on from parents to their children. It is so important to be tested if you do not know if you carry even one of the genes. Babies are now tested when they are born, but adults still need to know if they have sickle cell disease by being tested. So, I know you are wondering what can you do? Well, I will be hosting along with the Metro Birmingham Chapter of the NAACP and Life South Community Blood Centers the Second Sickle Cell Town Hall Forum on Saturday, September 22, 2012 at The Civil Rights Institute from 10am-4pm in the auditorium. We are challenging all churches in the area to register your church into the competition against other churches in the area; as churches send there members to give blood! Will you bleed for the cause? At the end of the day on September 22, 2012 we will acknowledge publicly the churches that gave the most blood. Those winning 1st, 2nd, and 3rd places will win a prize. So please tell everyone you know who may be interested to come and give blood and learn more about sickle cell disease. There will be 3 panels of experts, free testing, and pharmacy students privately discussing medications with anyone who brings all of their medications. There will be many more activities throughout the month. Please go to my website to get more information and register your church. I would love to come to your church to speak! You can also give any amount of a donation on my website, no amount is too small. I hope to see and meet many of you soon! By Tina Kay Hughes, www.tinakay.net , contact@tinakay.net

New Discoveries

It amazes me everyday how my child who is now one year old can discover something new that she’s figures out on her own. Recently, she learned the word “Go”, she knows it means she needs her shoes to get into the car and go someplace. So, after I’ve gotten her ready by doing all the things like new diaper, lotion, brushing her teeth, and her bag is ready; she says “Go, Momma, Go”. Sometimes she may even help by putting random things into her bag like a piece of her Mr. Potato Head or a plastic shape. After she has said go so many times she comes find me to see what I am doing or she goes back to watching Nickelodeon Jr. Another thing she has discovered is she can make her body go by sitting on the hardwood floor and pushing herself backwards that I found to astound me. After I noticed her doing this I even tried it and it is a good way to exercise your core and your arms. I can give you all kinds of ways my child amazes even me. The point I am making here is even a baby finds new things in her life that absolutely shock her and me. Why is it that we will not try to learn how to do something everyday? How is it that we are fine with status quo? What is it that we want to do but are afraid of what others might think if you took a leap of faith? When will you trust that God might actually like to give you something but just as your breakthrough is about to happen, you stop? Little children can teach us a little something because they are not afraid, they have not learned what it means to be frightened. We as adults have to think things to death. We want to know all the who’s, what’s, why’s, and how’s before we venture off in a new direction. A lot of people miss out on blessings because of apprehension and lack the faith needed to allow anything that looks unfamiliar to upset the complacency in our lives. However, little children don’t know what to expect if they push a new thing or pull a wrong thing, they just want to see what happens. The next chance you get to watch a very young child who is making new discoveries, sit down and take a minute to observe. I’m sure you will find it’s not very hard to make new discoveries. You will witness that there is nothing wrong with trying a new thing. The longer you wait, more than likely you will never have the faith needed (not even the size of a muster seed of faith) to explore like a child all the wonderful things in this world that are just waiting to be found by you. By Tina Hughes, www.tinakay.net, If you are interested in having me come and speak, I can be reached at contact@tinakay.net

From Heart

We live in a world where people use other people as an asset, an ATM, a slot machine, a ship traveling from here to there. What I’m saying is most (I did not say all) people form relationships with ulterior motives that the person who is doing the using does whatever they need to get what they want from another. Call it what you want, to me this punk is like hustling someone, pimping someone, and pretending to be something they are not. I think of it as using someone as having a means to an end because the relationship is only temporary with no roots because the imposter (or user) will go to any means necessary to accomplish what they have set out to capture, receive, and use for their own benefit. This type of arrangement will kill a tree because it has been poisoned from the beginning and as soon as the imposter has what they are after the tree falls over dead.

Now, while all this strategic maneuvering is taking place by a leach of a person that wants to suck you dry, the person who has a kind heart, believes in opening themselves up to others is considered to be an asset has a big heart. This kind hearted person does not have a clue about what the consequences of being involved with the con artist who wants to use you how ever you please because you freely give of yourself. The big hearted person does not see what is happening right before their eyes. They may think, “Wow I met a really nice person, I will allow them to come into my life, because they seem to be okay”. However, beyond their wildest dreams they don’t even know they are being plotted upon and about to enter a revolving door to take advantage of the kindness, love, and a willingness to help anyone.

Has this ever happened to you? It has to me! Now after the counterfeit relationship has been found out by you because you begin to become suspicious of some of the things this newly formed friend does and says. While those who really love and care for you, see the games that are being played on you by another. At first, you deny it but what people are telling you causes you to take heed and do a little reflection. It does not feel good by any stretch of the imagination to be played on by anyone. Now that you have been used and the person whom you considered a friend has blown away with the wind knocking down that tree you thought represented your relationship; the initial reaction is disbelief, hurt, and anger. But how you handle the situation is what people are watching to see how you respond.

I shared with you that this has happened to me on numerous occasions because I know in my heart that God will deal with the person who has wronged me; vengents is God’s not mine. I can’t stop believing in filling a need if I see a need. I know people are only human and all people are not the same. Lastly, I’ve been a mess in my life, I’ve done the same, and I have fallen short many times on doing what my Maker would like me to do. So put my trust, faith, and belief that helping those who need help are genuine because what I do for others comes from loving people without any recognition or any reward in this journey called life. We must remember to push on past the foolishness that most times is caused by fools in your life. We must listen to that voice within instead of doing what you want. No one is perfect among us, but God does expect us to continue to help because He has forgiven us time after time for our own short falls.
By Tina Kay Hughes www.tinakay.net