SICKLE CELL MYTHS ABET STIGMA

In 2011 in my first semester of my final year at the university, I was seated in the lecture room holding a magazine with a photo of Mrs Ruth Nankanja Mukibi the founder and Executive Director of Sickle Cell Association of Uganda. By then she was 36 years old, my course mates asked me about the lady and I told them she was a sickler. Their uniform answer was that it she can’t be and I was just speaking ill about the lady. Their reasoning was that a person with sickle cell cannot live to celebrate their 9th birthday and if they live longer by God’s grace at least they do not make 12 years. I told them am also a sickler and am not dead. They were shocked. It was a difficult situation for me to confess because I did not know how I would be treated or what amount of stigmatization I was going receive.

I confessed being a sickler because I wanted to counter the myths and stereotype that comes with sickle cell disease, the people living with the disease and those who care for them. What I was waiting for was the harsh treatment I was going to receive from those people whom I had told that I have sickle cell. To my surprise their treatment was good. One of them who was just a colleague and a classmate from that time became my good friend and she always check on me to find out how am faring. Another classmate called a year after university and inquired about how to take care of her cousin who is also a sickler. What I had feared that my confession was going to haunt me has just turned out to be a blessing. I realized that these people were confined to the thinking that sicklers die early because they did not have anyone to counter and trash that myth.

Knowledge is power that is a universally accepted statement. 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

When I audit the last five years of my sickle cell advocacy, 8 out of 10 questions asked at every awareness session are about myths. It’s not surprising that sickle cell has remained one of the diseases that are poorly understood by the public. When it comes to our African society witchcraft and its association to the disease makes life of sicklers a menace.

I want to put the facts clear to counter the myths. Sickle cell awareness campaigns shall be smooth if the myths are countered and erased from the public domains.

Myth

Sickle cell is infectious and contagious.

Fact

This is one of the popular myths and has also greatly contributed to the stigma faced by people living with sickle cell disease Sickle cell is not contagious disease. It’s an inherited disease that passed from parents to the child. Just like skin colour which can not be changed when you sit, eat, play or sleep with someone with another colour also sickle cell can not be gotten by associating with someone with sickle cell disease.

Myth

Sickle cell patients die at 5, 9, 12, 16, 21, 25, 30

Fact

People living with sickle cell disease can live a normal life when taken care of well. Although their life expectancy may not be the same as other people but they can live longer. I remember Mzeei Bulasio Wamala a Ugandan who has been recorded as longest living sicklers who died in 2008 at the age of 78 years. It’s not true that people with sickle cell disease have an age ceiling which they can not live beyond. Most people are told that they will not live to celebrate their 5th birthdays, when they reach 5 they are told 9 after 9 its pushed to 12, 14, 16 19, 21, 30. Its only God who knows when a person will die even doctors don’t know. We should not believe the prophets of doom.

Myth

Sickle cell patients don’t bear children

Fact

This is a common “verse” for lack of better word being told to people with sickle cell. It’s common to find people with sickle cell confined in corners and have made to believe that they will never live to see the happiness of having their own babies. A person with sickle cell has the ability to conceive and bear children. There are a number of sicklers who have more than two children.

Every sickle cell awareness campaign should put a lot of effort on providing information that counters myths and sickle cell stereotypes.

Love Life!

Ssebandeke Ashiraf

Sickle Cell Warrior #11

10003 Sickle Cell Warrior #11

Etemesi
29 Warrior Years

I am a warrior born 29 years ago, and the journey has been full of pain and joy  at the same time. Like other warriors I have been in and out of hospital, and also like other warriors I have found unique gift that makes me special and significant.

Painful episodes and less frequent depression made me look at life as big mountain that I cannot climb. True, life is a  mountain I cant climb; especially if, my family and friends constantly look for hope in my situation. However, I can climb this mountain and bring hope; especially  when I look beyond the sickle cell  wound to the power of Christ that is in me. Power that works within me; that will enable the warrior in me, to reach the mountain of hope. 

I can now proudly say that I enjoy life as a warrior especially when I know that my significant role is to be a product of hope to my generation. As Paul puts it, that I can boast all the gladly about my weakness, so that Christ power may rest on me.. And in turn as a warrior, I will not only be a messenger of hope But a product of hope.

Catch up with me HERE as i continue through the journey that is life.

Love LIFE

Etemesi 

Sickle Cell Warrior #10

10003 SICKLE CELL WARRIOR #10

Donna. A
27 Warrior Years

I am a lady, 27 years of age. My parents died in 2002 and before that we were all unaware I had Sickle Cell. I later discovered it when I collapsed in school and was taken for a checkup. From then on that’s when I started with my medication and checkups. I was 14years old when it was discovered.  I faced negative perceptions from people around me. Never believed I would reach 18. I also stopped going for checkups due to financial problems. I only go to the hospital when in crisis. After 20 years people started seeing my determination and always want to hear my story. So far God has brought me and further will he take me.

Catch up with me on my facebook HERE to find oud more about how i conquer Sickle Cell everyday.

Love Life

Donna

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.

 

NUTRITION MYTHS IN SICKLE CELL ANAEMIA

Hey people, I hope you've been learning tones from what we've had on the blog so far. But our journey has only quite begun and it’s going to get more exciting. This week we will debunk at some of the nutrition myths surrounding SCA. It’s important to separate facts from fiction so than we are able to make wise decisions.

Let’s start!! Shall we??

1.       Medication is the only way to treat SCA. While it is important to follow a medical treatment regimen, it is equally important to ensure that SCA patients get adequate nutrition. It is important that their meals should be nutrient dense: adequate calories, proteins, fats, vitamins and minerals. They should also take not less than 2l of fluids daily.

2.       Iron supplements can treat the disease because the patients are anemic. Anaemia in SCA is a symptom. It is not caused by iron deficiency but difficulties in transporting or processing the iron. The use of iron supplements will also cause toxicity from a iron overload that will promote development of infection. Unbound Iron behaves like free radicals and these may lead to further organ damage.

3.       SCA is a genetic disorder and our fate is already sealed. This is false and SCA patients can have prolonged lives. Though we have little control of the disease’s expression, we can manage it by following the doctor’s instructions, taking medication, eating healthy and doing light exercises. This ensures that the body is able to fight of infections much better and reduce frequency and intensity of frequency.

4.       Animal proteins are rich in iron, the more I eat the better. While animal protein has significantly lower but adequate iron levels it may contribute to further complications especially of the liver. You cannot get toxicity from iron rich foods but in the case of SCA, when iron is assimilated from food, a small amount is taken up by the body. The excess must be removed by the liver which may be already overworked. This contributes to liver damage among other complications.

Remember proteins are still important for good health. They should not be completely eliminated but regulated. 

Food is important in maintenance of a good health status and it is crucial to know what we eat and how it is used by the body.

Well there you have it. 

Till next time,

Love life!!

Joyner 

Where it all Began

From whence we came,
Find out how it all started and why we started the project.
This video was taken by Viionaries Aloud at the Pawa254 rooftop.

I still cant believe we made it this far, 5 months later. The greatest lesson learnt through this journey is that patience, persistence and courage go a very long way. Yo don't need to be superhuman to make change. As long as you understand there is no chnage greater than that made within yourself.

If you cant view the video above, watch it here 10003 Warrior Project

Let us know if you've interacted with the project or if you would like to do so.


Love Life!
Lea

Sickle Cell Warrior #9

10003 Sickle Cell Warrior #9

Mercy A

19 Warrior Years

I don't know what it is with girls and their fathers', perhaps a father can give us a bit of introspect into this subject.

When i first met Mercy, she like many other younger warriors were very keen to participate in the project. To speak out about a very sensitive issue that affects numerous young girls in Kenya takes a great deal of courage.

Courage is the one thing that i was reminded of when i talked to Mercy. She has faced great hardship in her daily battle with Sickle Cell disease. Many times she has had to stay in one class as her classmates advanced to the next level, as she tries to catch up on the missed lessons. In a system that doesn't quite cater for special needs students with SCD, many of them are shunned by teachers and deemed not good enough or just another non-performing cliche. 

Mercy however rose above those mental models society knowingly or unknowingly bestows on us. The biggest one being, Sickle Cell Warriors are lazy, dumb and sickly. 

 Here's how Mercy sees things

“Being a warrior does not make you different from others. Most of us have been told a lot about our lives but in all I have built my faith on hope and faith. I have ignored the voices of doctors and anyone who pulls my hope down, that’s why I’m still moving on. In all I've trusted in God.”

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

TO ADHERE TO TREATMENT SICKLE CELL PATIENTS NEED TO BE EDUCATED

In her debut memoir Living with sickle cell disease: The struggle to survive, Judy Gray Johnson 72, one of the longest living person with Sickle Cell Disease recollects that she was 16 years in 1959 when she had gone with her aunt to a doctor who diagnosed her with Sickle Cell Disease. She writes that the social mores of that time dictated that adults discussed nothing of substance with children. She was never told anything concerning Sickle Cell Disease.

It may seem that was for the 1950s or for the last century and never crossed into the 21st Century (2000s) or the information age. That has not been the case, in 2002 when I was first diagnosed with sickle cell 43 years after Judy was diagnosed it was the same story for me..

"That’s a universal situation. Most Sickle Cell patients lack knowledge about their condition"

I was 12 years then, when the doctor handed the results to my father nothing was taught to me about the disease I was going to live with for the rest of my life. It was only the cocktail of drugs prescribed after the diagnosis that was explained to me.

Were these people reading the same script? It’s the question I still ask myself.

That’s a universal situation. Most Sickle Cell patients lack knowledge about their condition. Some patients finds themselves in dilemma when they don’t know the symptoms, warning signs when a crisis is going to happen and what to do to arrest a crisis.

Patients with Sickle Cell need to be better educated about their health. Most are less likely to get accurate information about their disease. One mother to a Sickle Cell warrior daughter shared her experience with a nurse; she revealed that a nurse who even treats other Sickle Cell warriors told her that Sickle Cell is infectious and any person can get it even later in life. If a medical personnel can give unforgivable information like this, I don’t this this nurse can give correct information about treatment and how to avoid a crisis.

"The most difficult stage for people living with Sickle Cell Disease is transition from pediatric to adulthood. Because previously it was difficult to find many adults living with the disease,"

Still some of the patients lack a better understanding of many symptoms of Sickle Cell and there is a need for improved patient education. Improving patients understanding about why a particular treatment is important for an individual situation may lead to more informed decisions and better adherence to treatment.

A better comprehension of one’s symptoms and reasons for personalized treatment recommendations also could improve a patient’s trust, confidence and satisfaction with primary treatment provider.

The most difficult stage for people living with Sickle Cell Disease is transition from pediatric to adulthood. Because previously it was difficult to find many adults living with the disease, so all the efforts and resources were channeled to caring for children with Sickle Cell. The situation has now changed and sicklers progress to adulthood.

So now there is a need to have a special education programme for adolescent and adult patients. The programme needs to cover issues like the reasons for taking daily drugs, different pain coping methods and reasons for delayed growth. This can also reduce on the stress experienced by most teens.

A comprehensive patient education program can focus on connecting adult patients with sickle cell disease with primary care providers and support the relationship. Help older adolescents and young adults with Sickle Cell Disease to transition smoothly from pediatric to adult primary care doctors and finally primary care providers to care for people with sickle cell disease of all ages and provide necessary tools to deliver high quality care.

Love Life!

Ssebandeke Ashiraf

Catch up with me HERE where you can read more of my written pieces on Sickle Cell Disease. 

Sickle Cell Warrior #8

10003 Sickle Cell Warrior #8

Stephen. B

36 Warrior Years

Whoever said "Age is nothing but a number" has never lived a day in their lives.

A husband, a father,a businessman and a warrior. Steve is the oldest warrior featured so far. Wisdom is gained through experiences lived and challenges conquered. Our bodies may fail us everyday but our minds and hearts should never cease to find hope in each day. Our lives expand and unfold in the direction of our minds. Dis-ease should not limit you in anyway, but inspire and drive you to overstand your body, do better and live healthy fulfilled lives.

Steve's words of wisdom to other warriors,

“I am 36 years old and I was born with Sickle Cell and I’m proud to be a warrior. I would like to tell people out there that Sickle Cell can live up to even 80 years or above. I would like to tell other warriors to avoid stress, eat well, keep warm, drink lots of fluids and life continues.”

Love Life!

Lea

IMPORTANCE OF NUTRITION IN SICKLE CELL DISEASE

Nutrition! What has food got to do with my red blood cells? I’m sure you’re probably wondering what the big fuss is all about, but nutrition plays a very significant role in our lives. It is important for growth and development and a strong immunity against infections. In patients with Sickle Cell Disease, appetite and immunity are greatly affected which results in poor growth, poor sexual maturation and increased susceptibility to infections. This affects the quality of their lives and will often be sickly if basic proper care is not given.

Therefore dear warrior, keep in mind that you have extra requirements for nutrients such as energy, protein, water, folate & zinc. It is recommended that you take extra vitamins and minerals in order to replenish those being lost or those on higher demand by your body due to the nature of the disease. Extra protein and energy are required to promote growth & maturation especially if you are a child or adolescent with Sickle Cell Disease. Folic acid is needed in extra amounts so that it can aid in the increased production of red blood cells needed to replace the destroyed ones, while zinc is needed to increase oxygen affinity and perform its functions in skeletal & muscle growth and sexual maturation. While these are important we will also discuss other nutrients whose increased intake aid in management of Sickle Cell Disease. These include Vitamin A, Vitamin E and Vitamin C.

Hearty Nutrition for Sickle Cell

Food choices in Sickle Cell Disease have great health benefits to you and even go beyond providing nutrients only –they can affect how frequent your symptoms occur, imagine that! Most foods that have been implicated with triggering crises are animal protein sources due to iron overload and their complexity in digestion. Vegan diets have been associated with less frequent and severe episodes (yes contrast to common thought, being a VEGAN aids in much more than just weight loss). Your dietary intake may be low because of abdominal pain crises caused by some certain foods, but at the same time you need a high caloric intake because of hyper metabolism caused by the constant inflammation. Therefore, it is very essential for a healthy Sickle Cell diet to avoid trigger foods. Your diet should be low in:

• Sodium –a component of salt. If you’re one of those people who grab the salt shaker right away before tasting your food, keep note! Salt leads to dehydration by ‘sucking’ the water out of our body cells leading to painful crises episodes.

• Added sugars –such as those found in sodas, processed juices, sweets & candies cause dehydration in the same way as salt does.

• Solid fats – include saturated fat and trans fatty acids which adversely raise the levels of low-density lipoprotein (LDL)/ bad cholesterol and lower the levels of high-density lipoprotein (HDL)/ good cholesterol in the body. They cause abdominal obesity, inflammation and insulin resistance. In the long term, consumption of trans fats raises the risk of obesity, diabetes, heart disease, stroke, depression and many more diseases.

• Refined grains and products –such as white baked foods (bread, cake, mandazi and donuts), white rice and white refined flour are easily digestible & release glucose quickly. This causes a rapid spike in blood sugar, followed by a surge of insulin in the blood, typically followed by reactive hypoglycemia –a low energy feeling caused by over-secretion of insulin. This is why we feel so hungry & weak after eating such foods. Such foods also lack some nutrients present in their counterparts –whole unrefined grains.

Watch Importance of Nutrition Video , a short pictorial on cheap available foods that are easy to source within Kenya

Nutrition is irrefutably very important in managing Sickle Cell Disease. Don’t you agree? And this is just a tiny drop from an ocean of health benefits. Log on to see the nitty gritty details of how each nutrient we have talked about helps in managing Sickle Cell Disease & discover their richest sources. But before you do that remember that power is gained by sharing knowledge, feel free to comment below on how nutrition is so important to you. Until then, eat healthy & stay strong.

Love Life!

Sharlene Mule

WHAT IS SICKLE CELL DISEASE II?

Last week we started our discussions on Sickle Cell Disease. I gave you and introduction on the basics of Sickle Cell Disease. If you missed it, click HERE to read. It is a series of information that will be building up from where we left off last, hence it’s important to start from the beginning.

As many of you know, Sickle Cell Disease is a foreign term in Kenya. Not because we don’t have cases in Kenya but because there is not much awareness of the disease within our country. Awareness plays an importance of ending ignorance on a certain issue. And in this case creating awareness of Sickle Cell Disease ends the ignorance brought about by sheer oblivion of information on this social issue.

What I’m’ trying to say in very many words is this; we will not be able to drive change without identifying the need of that required change. Why do we need change?! And we will not identify the need without creating awareness of the many lives lost to Sickle Cell Disease and not to forget the ones who continue suffering due to lack of information and support systems/policies.

Sickle Cell awareness creation seeks to end the viscous cycle of misinformation and death of a community. This is by the simple fact of providing knowledge to a community to enable you to make informed decisions about yourself, your family and your community.

Last week I mentioned that few people in Kenya know about Sickle Cell and even fewer know about their Sickle Cell status. It is important to know your status as it helps you know whether you carry the Sickle Cell gene.  This will help you be aware of the risk of having children with Sickle Cell Disease.

It is most important so as to be screened to help in diagnosis and confirmation and also to monitor any treatment administered by doctors.

I need to know if I carry the gene. How can I be tested?

A simple blood test called the hemoglobin electrophoresis can be done by your doctor or hospital. This test will tell if you are a carrier of the sickle cell trait or if you have the disease. We certainly don’t like giving you half bake information that may be inaccurate; please exercise patience with us as we conduct our research. Stay tuned for a deeper discussion on where you and your family can get the test done in Kenya and at how much. We are still conducting research on where we can direct people and what are the methods and cost variability between the different health center labs.   We will also give you an overview of methods of evaluating the type and amounts of various normal and abnormal hemoglobin types. This will be discussed in a later post on April 1^st 2015. I promise :)

What will this test likely tell me? Are there different types of sickle cell disease?

This test will let you know of which gene/genes of Sickle Cell you carry. There are three common types of sickle cell disease

·         Hemoglobin SS or sickle cell anemia

·         Hemoglobin SC disease or Sickle Cell Carrier

·         Hemoglobin sickle Beta-Thalassemia

You now know what Sickle Cell Disease. Tell me why  it is so bad; What complications are associated with Sickle Cell Disease

Complications from the Sickle Cells blocking blood flow and early breaking apart may include but not limited to:

·         pain episodes

·         strokes

·         increased infections

·         leg ulcers

·         bone damage

·         yellow eyes or jaundice

·         early gallstones

·         lung blockage

·         kidney damage and loss of body water in urine

·         painful erections in men (priapism)

·         blood blockage in the spleen or liver (sequestration)

·         eye damage

·         low red blood cell counts (anemia)

·         delayed growth

Symptomatic Expressions of Sickle Cell Anaemia

What can be done to help prevent these complications?

Sickle cell patients should be under the care of a medical doctor that understands Sickle Cell Disease. All newborn babies detected with Sickle Cell Disease should be placed on daily penicillin to prevent serious infections. All of the childhood immunizations should be given plus the pneumococcal vaccine. Parents should know how to check for a fever because this signals the need for a quick medical check-up for serious infection. The following are general guidelines to keep the sickle cell patient healthy:

·         Taking the vitamin folic acid (folate) daily to help make new red cells

·         Daily penicillin until age six to prevent serious infection

·         Drinking plenty of water daily (8-10 glasses for adults)

·         Avoiding too hot or too cold temperatures

·         Avoiding over exertion and stress

·         Getting plenty of rest

·         Getting regular check-ups from knowledgeable health care providers

Patients and families should watch for the following conditions that need an urgent medical evaluation:

·         Fever

·         Chest pain

·         Shortness of Breath

·         Increasing tiredness

·         Abdominal swelling

·         Unusual headache

·         Any sudden weakness or loss of feeling

·         Pain that will not go away with home treatment

·         Priapism (painful erection that will not go down)

·         Sudden vision change

Well, there you go. I trust this explanation gives you a bit of introspect on what Sickle Cell Disease is how it manifests in the body’s of the Sickle Cell Warriors. Do you know anyone who has Sickle Cell Disease? Kindly comment below and tell us if this article has helped you to understand what they go through.

Are you a sickle cell warrior? Let us know what new thing you've learnt today about Sickle Cell.  Leave us a comment or a question that you may want us to cover on this series.

Stay tuned for the next exiting posts that will look into the origins of Sickle Cell. Find out the oldest record of Sickle Cell known to man. Until then  

Love Life!

Lea