Magical Monday Motivation

10003 WARRIOR PROJECT SICKLE CELL MOTIVATION MONDAY

From the funniest man who ever lived...

“As I began to love myself I found that anguish and emotional suffering are only warning signs that I was living against my own truth. Today, I know, this is “AUTHENTICITY”.

As I began to love myself I understood how much it can offend somebody if I try to force my desires on this person, even though I knew the time was not right and the person was not ready for it, and even though this person was me. Today I call it “RESPECT”.

As I began to love myself I stopped craving for a different life, and I could see that everything that surrounded me was inviting me to grow. Today I call it “MATURITY”.

As I began to love myself I understood that at any circumstance, I am in the right place at the right time, and everything happens at the exactly right moment. So I could be calm. Today I call it “SELF-CONFIDENCE”.

As I began to love myself I quit stealing my own time, and I stopped designing huge projects for the future. Today, I only do what brings me joy and happiness, things I love to do and that make my heart cheer, and I do them in my own way and in my own rhythm. Today I call it “SIMPLICITY”.

As I began to love myself I freed myself of anything that is no good for my health – food, people, things, situations, and everything that drew me down and away from myself. At first I called this attitude a healthy egoism. Today I know it is “LOVE OF ONESELF”.

As I began to love myself I quit trying to always be right, and ever since I was wrong less of the time. Today I discovered that is “MODESTY”.

As I began to love myself I refused to go on living in the past and worrying about the future. Now, I only live for the moment, where everything is happening. Today I live each day, day by day, and I call it “FULFILLMENT”.

As I began to love myself I recognized that my mind can disturb me and it can make me sick. But as I connected it to my heart, my mind became a valuable ally. Today I call this connection “WISDOM OF THE HEART”.

We no longer need to fear arguments, confrontations or any kind of problems with ourselves or others. Even stars collide, and out of their crashing new worlds are born. Today I know “THAT IS LIFE”!”
― Charlie Chaplin



Love yourself .

Love Life :)

Lea Kilenga

10 SICKLE CELL BOOKS OF HOPE

Human beings behave in the same way cars behave. When the fuel tank of a car is empty it will not move. In human being hope serves the same purpose as fuel in car. A person without hope cannot live because hope is 99% of our life.

Most warriors get to a point in life when the hope levels have gone down. You need to refuel your hope and continue with this journey. There different hope fuelling stations which can fill the hope gap. One of them is books but not every book can bring hope again. Imagine a car that uses petrol to be fuelled with diesel, it will not move.

The better hope fuelling station for sickle cell warriors is reading books which have been written by fellow warriors or even parents to warriors. This can help you overcome the challenges that have put your hope level down. I have compiled a listed of 10 books every sickle cell warrior must read

S is for Survivor by Saamira Haruna Sanusi

This book is an autobiographical note about the experiences this Nigerian lady went through with Sickle Cell Anaemia and many people are in similar situations without knowing that there is hope. Growing up, life was always about medications after medications, and this life of painful crisis makes one to believe that there is no meaning or purpose to life. It also creates the tendency to feel hopeless and helpless. S through Sickle Cell patient experiences from birth to the time when she had her Bone Marrow Transplant and these experiences in the form of crisis and health complications are familiar with many Sickle Cell patients. These peculiar experiences unknown to the rest of the world tell a success story that shows transformation from SS through genetic engineering to AA (genotype), and therefore permanently SS free. In this book Saamira shares her personal story of experience with the disease and a concrete message; “Sickle Cell Anaemia has a cure and I am a message of Hope”.

Still standing by Toyin Adesola

Still Standing is the compelling and courageous story of a woman’s battle with Sickle Cell Anaemia. This book chronicles the experiences of Toyin Adesola as she battles the traumatic challenges of living with the disorder. It is a story of hope, courage and tenacity that is recommended for anyone who feels life has dealt them a bad hand. It is a story that touches the soul and inspires one to look beyond one’s circumstances

I Only Cry At Night: living with Sickle Cell Disease by P.Allen Jones

Kristina’s review “This book is a great read! It takes you on a journey through the life of a strong willed, ambitious, and humble woman who fought many battles in life ON TOP of dealing with Sickle Cell disease. Throughout this heartfelt story, Jones draws you in with her humanistic writing style, giving readers an opportunity to step inside the shoes of a sickle cell patient and see what life is like while living with this rare disease. This book is an inspiring read and will motivate anyone who has ever had to overcome a struggle of any kind, and felt alone while doing so. It's also very informative for anyone who has sickle cell disease or knows someone who does. I highly recommend it."

Living With Sickle Cell Disease: The Struggle to Survive by Judy Gray Johnson

Review on Amazon “This book is a fluent, informative and candid story of a life filled with a fight for surviving a little-known genetic disease and a fight against prejudice spanning in decades. The author could not win the all battles but she always tried and never gave up. I recommend this book to those who want to learn how someone with a disability can survive and manage a productive and bold life. It is also a must read book for sickle cell patients who want to deal with both the disease and poor bedside manners.”

Sickle Cell Natural Healing: A Mother's Journey by Tamika Moseley

After spending every three months of her new-born’s life in the hospital managing his sickle cell disease, Tamika Moseley knew she had to change what she was doing or the hospital would be her second home. In this deeply personal book, Tamika shares her story of the difficult journey she took to find natural ways to treat her son's debilitating disease. Three years since she started using herbs to minimize his sickle cell crises, her son is living a normal, healthy and pain-free life. Whether you have sickle cell disease or the trait, this book will show you what your body needs and how to treat your symptoms so that pain is no longer a part of your vocabulary. As Tamika likes to say, "Knowledge is power" Sickle Cell Natural Healing: A Mother's Journey gives you the benefit of the wisdom one fearless and determined mother collected so that others suffering with this disease can thrive.

Sickle Cell Disease 100 Years Later by Dan Moore Sr and Phyllis Zachery-Thomas

A moving account of patients and families dealing with the effects of sickle cell disease, a genetic disorder.

Sickle Cell Anaemia Challenges: Courage to Face Adversity by Willa Boykin

Sickle Cell Anaemia Challenges: Courage to Face Adversity Describes an on the road account of what life was really like as a mother, caregiver and mentor for two of their children born with sickle cell anaemia. It also shares valuable lessons on living a balance lifestyle that includes wisdom. We cannot be balanced at all times, but the book will give you an outlook on character for those who walk in wisdom and those who are not. Love is not love until first it has been given away, and then it can be multiplied back to you. This is accomplished only through obedience.

Meet Camden: Living with Sickle Cell Anaemia by Ishia L. Washington-Gattis

This fun and knowledgeable book is about a 9 year old boy named Camden. He has Sickle Cell Anaemia. This book will show Camden's courage and strength in his day to day life. It will also explain some of the things you may go through if you have Sickle Cell Anaemia.

My Sickle Cell Story by Mariah Lynn Jeanae Roberts

"My Sickle Cell Story "tells the journey of 7-year old Mariah Roberts, as she battles Sickle Cell Disease. While every day is not easy, she remains strong through her faith in God, love from her family, and the hope that one day she will be healed. Mariah explains her sickness, triumphs over surgery, successfully completes her first year of school. It is Mariah's hope that through "My Sickle Cell Story" others like her will be encouraged as they remain strong with their own battle. It takes one to reach one.

Taking My Medicine: Seeing Sickle Cell Anaemia through My Eight Year Old Eyes: One Child's Perspective by Egypt A. Harvey

This book explores the reality of an eight year old child diagnosed with Sickle Cell Anaemia. Taking medication every day is reality and has an impact on everyday life. This book captures the author's personal thoughts and feelings about taking her medicine daily. She feels it is important to share her story with other children diagnosed with Sickle Cell Anaemia.

If you know any book that has helped you to refuel your hope please share it in the comments section. If you have written a book about your life as a sickle cell warrior please share it with us.

Love Life!

Ssebandeke Ashiraf

THE SICKLE CELL MYTH

The narrative that exists around Sickle Cell has been propelled by misinformation and the lack of platforms that empower those who are willing to change the story.We've all heard those statements people mistakenly say about Sickle Cell Disease. I feel it is time for us to take back and rewrite the story that has long been bendend and misinterprated.

It has taken me quite some time to over stand that in many cases its not out of malice or hatred,  its mostly due to ignorance and lack of knowledge. However much I sometimes want to slap people sideways for saying something that deeply hit a nerve, I am reminded by one  Ssebandeke Ashiraf  on his ealier post on myths, "A person who has been equipped with knowledge is better positioned to guide and also do the right thing. Myths, stereotypes, stigma and ignorance have all been erased by people who are well equipped with the right and useful knowledge ."

And the only way to do so is to write new stories that share and demonstrate the courage within our community on the many levels we see and relate to it. Stories that relate to the community on a deeper sence of love, vulnerability and humanity. Humanity in that does not isolate the suffering to individuals but recognizes the overall suffering experienced in our communities.

Anyway, for all the Sickle Cell Warriors, families, friends and concerned citizens, who don't know how to deal in such situations, here is a list of misconception and fallacious statements that you've heard atleast once in your lifetime.

"Sickle Cell Disease is as a result of a curse." Nott! This is mostly heard in the rural setting where information about the disease is still *hush hush* and people don't really speak about it. Saying that SCD is a curse goes to show how little knowledge and information of the disease is available to the local community. In such a case, proceed from to explain SCD from the beginning


"Sickle Cell comes from your side of the family." We explained how gene transference in an earlier post HERE. It takes two parents to contribute to the genetics of the child. Hence two parents to contribute to the gene make up of a child with SCD (SS)

"Sickle Cell Warriors cannot have families". Like anybody else, Sickle Cell Warriors can lead healthy fulfilling lives. The key to this is to know your body so well and its Sickle Cell manifestation that you can easily anticipate and manage your condition. Moreover have the right support systems to enable you in life. This means, hospitals, doctors, medication and most importantly, knowledge. Once you accept and know how to manage your condition, your partner will also learn to accept and learn your condition as well. Provided you're open and frank and share your experience. Be patient with them.

"Sickle Cell is a form of cancer." Well, I know some of the symptoms/side eefects we exhibit  maybe as servere as those exhibited by cancer patients; from the popular medication 'hydroxyurea', a chemo drug, widely prescribed and used around the world to manage SCD. But I assure you, it is not cancer. SCD is a genetic blood disease that causes deformation of round full red blood cells to hard crescent shapes red blood cells.


"Sickle Cell Warriors need lots of iron.". Yes and No. SC warriors need the right amount of iron. If they have too little, due to constant destruction of red blood cells, it causes anemia. On the other hand, too much iron can cause iron buildup which leads to iron poisoning , that can damage your body. Its a delicate balance you have to maintain within your body. As long as your diet is rich with wholesome iron rich foods like fruits and vegetables, there is no need to worry about your iron levels. And as long as your blood is functioning at an optimum, your body will follow suit as well.

"Sickle Cell Warriors are immune to malaria.". This is quite false. The only kind of Sickle Cell that is immune to malaria is the Sickle Cell trait (AS). This gene was developed 1000+ years ago as a defense mechanism against Malaria in the Agricultural revolution. Only on reproduction of two individuals who carried the trait, did the disease come into being. Sickle Cell Warriors are susceptible to malaria and in some cases fatal if proper treatment isn't administered.

Is there any we've missed, What other myths have you heard ?

Love Life!

Lea

YOU NEED TO LEARN ABOUT SICKLE CELL TRAIT

On January 18th this year, Shanice Clark 21 a college basketball star of California University of Pennsylvania was found unresponsive in her dorm room. She was rushed to Monongahela Valley Hospital but she could not be revived and was pronounced dead. California borough police said that a preliminary report from medical personnel indicated the death appeared to be accidental and there were suggestions she had choked on gum while sleeping.

On Monday this week a Washington coroner Tim Warco’s report blamed the death of the college star on sickle cell trait.

Sickle cell trait means having one gene for a condition called sickle cell disease (SCD). This in itself does not normally cause problems and sickle cell trait is not considered as a disease. It is extremely rare for it to cause problems or complications, which mainly occur under conditions of severe physical stress.

There has been a long term discussion on whether sickle cell trait can cause pain and other complications or not except under extreme conditions. Their debate has existed for more than 50 years and some professors who have managed sickle cell cases for long time have refused to accept that sickle cell trait can cause complications despite the fact that they have come across many cases of trait carriers who get complications like haematuria.

I remember a review written by a professor in sickle cell about a research that had been done and published in Journal of American Forensics by Charis Kepron M.D, Gino R. Somers M.B.B.S, Ph.D and Michael S. Pollanen, Ph.D titled Sickle Cell Trait Mimicking Multiple Inflicted Injuries in a 5-Year-Old Boy (September 2009), in his review he argued that a person with the trait cannot get complications. In their research they had described a case of sudden unexpected death in a 5-year-old child with undiagnosed Sickle Cell Trait due to the Acute Chest Syndrome.

The boy’s story according to the paper was “5-year-old boy of Ghanaian origin was reportedly well except for a dry cough that was initially noted on the morning of the day he died. He had been given a single dose of an over-the-counter cough medication in the early evening, and on his way to bed began to vomit. His parents described copious vomiting from the nose and mouth, and EMS was called. Paramedics arrived to find the child with no vital signs and it appeared to them at the time of initial assessment that he had aspirated. Intubation attempts in the field were unsuccessful; therefore, the boy was bag-ventilated until his arrival at the nearest Emergency Department (ED) 30 min after the onset of vomiting. He was successfully incubated in the ED, and during the resuscitation efforts it was noted that his abdomen appeared distended, a sign that appeared to worsen over the course of treatment. The anaesthetist involved reported thick secretions in the airway and high airway resistance. The resuscitation attempt was unsuccessful and the boy was declared dead 30 min after arriving in the ED. There were no signs of injury, and the child appeared well cared for.”

The issue of sickle cell trait complications has remained controversial as the complications experienced themselves. No body seems to explain why the complications exist.

In both cases of Shanice and the 5 years old boy the preliminary investigations always focus on the soft points.

With the rampant increase in the number of people with the trait in the world there is a need to educate everybody concerned.

There is a need to have comprehensive education and awareness programs for everyone with a major emphasis on coaches, healthcare professionals, parents, and student-athletes on sickle cell trait and the prevention of sudden death. Sickle cell trait should not prevent anyone from participating in athletic activity; however, recent deaths from exertional sickling events in the athlete setting have demonstrated the need for more education. Education and prevention programs are the key to preventing an exertional sickling event.

Sickle cell trait is a generally benign condition in red blood cells sometimes causing them to carry oxygen differently. Athletes with sickle cell trait run the risk of experiencing exertional sickling events that may have injurious outcomes. Complications from sickle cell trait while exercising are mostly preventable.

There is also a need to have population screening for the sickle cell trait. A population unaware of the sickle cell trait (SCT) has resulted in a large population of individuals entering childbearing age with no knowledge of their risk.

Love life!

Lea.

 

GENETICS IN SCD AND NUTRITION

We’re back once again with a very complicated yet simple topic –Genetics!

Relax; this won’t be a recap of your high school biology class. It will be more of the kind of table talk that leaves you feeling like you just left here with a doctorate.  So, let’s get started!

By the time you got to this section, you knew that all types of Sickle Cell Disease (SCD) are caused by a genetic change in hemoglobin, the oxygen-carrying protein inside the red blood cells. Yes, I reassure you, it’s purely a genetic change or mutation that causes SCD –not bad luck or curses or other diseases or even poor nutrition. It’s just the genes you have on. But really, how and why do these mutations occur? I mean, it must have had a cause, right?

Well, according to a widely accepted theory, the genetic mutation associated with the Sickle Cell Trait occurred thousands of years ago (yeah, they just didn't pop up this millennium). You see, it’s believed that SCD began with a single carrier. Carriers of the sickle cell gene are said to have Sickle Cell Trait. Unlike SCD, Sickle Cell Trait does not cause health problems. In fact, sickle cell trait is protective against malaria, a disease caused by blood-borne parasites transmitted through mosquito bites. So the sickle cell trait actually began as a survival tactic for our red blood cells; it was and believed to still be, a DEFENSE MECHANISM against malaria!

You can imagine that cavemen didn't have any anti-malarial drugs and so Mother Nature simply increased the likelihood that carriers could survive malaria infection. Survivors then passed the mutation on to their offspring, and the trait became established throughout areas where Malaria was common –primarily tropical regions. This is why sickle cell disease largely affects people of African, Mediterranean, Middle Eastern and Asian Indian ancestry. As populations migrated, so did the Sickle Cell Trait. Here’s where the big BUT comes in, we had to multiply. Where the first two carriers went ahead to get an offspring which then began the Sickle Cell Disease history. This defense mechanism had this one unpredictable flaw.

Genetics in Sickle Cell Disease 

Research has not yielded any evidence of nutrition reversing the gene mutation in Sickle Cell Disease let alone any other genetic disorder, but as we have & will continue learning, nutrition plays a big role in management of SCD symptoms.

A silver lining has been seen in this cloud of gene mutation. Scientists say that replacing the gene that produces the defective hemoglobin in Sickle Cell patients, with one that makes normal hemoglobin, could be a possible treatment. According to a 1998 report in Science, researchers studied the blood cells from people who carry the Sickle Cell Gene. By using an enzyme called a ribosome, the study was able to alter Sickle Cells into normal cells. The ribosome cut out the mutated instructions in the cells' genetic pattern and replaced them with the correct instructions. Researchers hope that this will allow the cells to make normal hemoglobin—leading to the ultimate treatment for those with Sickle Cell Disease.

Until this research is considered full-proof in humans, we recommend genetic counselling which is just as important of nutritional counselling. A genetics counselor meets with families to review your family history, the inheritance of SCD, and the chances of having children with SCD and provide more education to people with SCD.

When will you visit your nearest genetic counselor? We’ll talk more on what to expect from them in the next article. Also we have some homework for you (so this is actually ending up like a biology class, sorry J) –leave comments below on any questions you have or any myths you've heard on genetics in SCD. We’ll keep you posted. Later!

Love Life!

Sharlene Mule

IS SICKLE CELL OVER 1003 YEARS OLD?!

Have you ever wondered where diseases originate from?

Why does disease arise and how do they come about?

How in the world did Sickle Cell Anaemia come about?

Sickle Cell Disease is a very old disease. It is older than you, me and the next two readers combined.  How do I know this you ask? Well, I connected the dots.   And as our good friend Steve Jobs put it, “You cannot connect the dots looking forward; you can only connect them looking backwards.”  So let’s go back in history.

The Discovery

In the annals of medical history, 1910 is regarded as the date of the discovery of Sickle Cell Disease, making 2010 the 100th anniversary of that discovery, but just what does it mean to say the disease was “discovered”? The disorder we call “Sickle Cell Disease” often abbreviated as SCD, had been present in Africa for at least five thousand years and has been known by many names in many tribal languages. What we call its “discovery” in 1910 occurred, not in Africa, but in the United States.

Enough about that, let’s go further back in time before 1910.

I’m sure we all know that Sickle Cell Disease comes about when two individuals with the Sickle Cell Trait/Gene come together; they pass down the gene and give birth to an individual with Sickle Cell Disease.  If this is new to you, go back and learn the basics HERE. The key word we need to note is Sickle Cell Trait. And since Sickle Cell Trait is the cause of Sickle Cell Disease, let’s look into the cause and origin of the Sickle Cell Trait.

Sickle cell trait occurred as a natural mutation of the haemoglobin gene. Sickle trait served and still serves as a protective mechanism against Malaria. Malaria is a deadly disease found in countries along the equator. People with Sickle Cell Trait are protected from Malaria while those with Sickle Cell Anaemia and normal haemoglobin are susceptible to it. Over the years people with Sickle Trait migrated to other continents to parts of the Middle East, Central India, and countries bordering the Mediterranean Sea, especially Italy and Greece.

So we now know the cause of the Sickle Cell Trait, Malaria resistance, what next? Yes, you got it; let’s have a look into the origins of Malaria.

King Tut's Golden Mask from Ancient Egypt

Malaria

The first evidence of malaria parasites was found in mosquitoes preserved in amber approximately 30 million years old. Human malaria likely originated in Africa and coevolved with its hosts, mosquitoes and non-human primates. About 10,000 years ago, Malaria started having a major impact on human survival, coinciding with the start of agriculture in the agricultural revolution. Consequences included natural selection for Sickle Cell Disease, Thalassaemias etc, because such blood disorders confer a selective advantage against Malaria infection (balancing selection). The major types of inherited genetic resistance (Sickle Cell Disease, Thalassaemias, etc) were present in the Mediterranean world by the time of the Roman Empire, about 2000 years ago.

To dilute it down, the information simply means that Sickle Cell Trait came about as a way to resist Malaria. Darwin's theory of 'survival of the fittest' is demonstrated well as individuals developed stronger genes to prevent from Malaria. The stronger gene is Sickle Cell Trait. However since there was no knowledge of this back then, people went about their business as usual. Intermarrying within gene families was not uncommon then which increased the chance of intermarriage between people who developed the Malaria resistant Sickle Trait, therefore bringing about Sickle Cell Disease.

King Tut of Egypt

Tutankhamun, is the world’s best known pharaoh. There are many speculations about the death of King Tutankhamun at the ripe age of 19 years. Why I bring this up is to show and demonstrate the age of Sickle Cell and how far back the disease had been existing.  Since the discovery of Tutankhamun's mummy, there has been a lot of speculation and theories on the exact cause of death, which until recent studies had been hard to prove with the evidence and data available.  One of the theories that caught my eye was one by Christian Timmann and Christian Meyer. They came to the conclusion that Tutankhamun did not die from a combination of bone disease and malaria, but instead had Sickle Cell Disease. Dr. Timmann and Dr. Meyer believed the Sickle Cell Disease turned fatal when Tutankhamun also contracted severe Malaria that was rampant in Ancient Egypt during his era. Tutankhamen's parents are thought to be related, boosting the chance that they both carried the Sickle Cell Gene. He is expected to have been homozygous recessive for the Sickle Cell Gene, thus making him not immune to severe malaria, which would have been fatal. So tell me, Is King Tut the oldest recently recorded Sickle Cell Warrior/patient?!

Wow isn't it all so surreal! The Sickle Cell Gene has survived millennial, centuries and decades of time up to this day and age. Sickle Cell Warriors such as myself can trace their gene back to the likes of King Tut.  Imagine a family tree that can be traced back in time to the beginning of ancient civilizations and evolution of mankind!

Coming back to the present moment, with the dots hopefully connected, do you feel you have a bit of understanding on the origins of Sickle Cell? I feel this brings everything into perspective and helps me understand why Sickle Cell Disease is. And not to mention the great need a couple thousand years and 115 years later, when humanity is still looking for sustainable solutions on Sickle Cell disease management.  

I say Knowledge is the Key! 

Love Life!

Lea