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

Sickle Cell Warrior #17

10003 Sickle Cell Warrior #17

 Hi

My name is Beverly and I am a class 6 pupil at Shiners Education centre. I learnt I have Sickle Cell Anaemia through my parents. When I was very young, my palms and feet got swollen for no reason and that's when my parents took me to the hospital for a diagnosis. They later found out that this was the "hand and foot" syndrome , a complication that occurs in children living with Sickle Cell.

Living with Sickle Cell disease requires a lot of medication. For instance I normally take Pen V for infection, Folic Acid to build my blood , Palwudrine for malaria and Brufen for the pain. Sometimes when the pain is too much and I can't handle it, I am taken to hospital for more medication. In this case, I am used to the blood transfusions and the drips and most importantly and hard to get used to, the very many injections. What has motivated me to keep going strong during pain is my parents who are always there and understanding that it will always go away.

At times I feel that I am a burden to my family because of the frequent attacks. Other than that I miss school a lot and that makes my teachers and schoolmates treat me like a special case. I know they can't say it but they think I've had some misfortune and my parents did something wrong to deserve me. Besides this, my disease shows in my yellow eyes and slow body development, and as a teenager I always feel different from everyone else.

Though I feel this way, I have learnt to accept myself and take good care of my body. Sickle Cell has a way of making you your own best friend. I hate take a lot of water and green leafy vegetables like Mrenda, Saga, Susa , Dek for my health. Sometimes getting this healthy food is difficult because of the expenses and the climatic area I live in. All in all I try to be the best I can be for myself and family. I am glad I have started now, it will get better as I grow.


Love Life :)
Beverly

SICKLE CELL WARRIOR #16

10003 Warrior Project Sickle Cell Warrior #16

“The possibility to love another scared me; terrified me actually. Being a free spirit, apart of me is most alive when roaming, than I became a mother and for the first time I felt my heart live outside my body and that's the moment his laughter became my medicine.”
― Nikki Rowe

A mother with her young Sickle Cell Warrior. We salute all the mothers who take care of us in the dark of the night when the pain is most unbearable. Those who stand by our bedside with care to push us through all manner of pain. Mothers who brave themselves through the tears and remember to be the sunshine in our lives.

Love Life!

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

One Who Fears To Open Up To The Doctor Cannot Get Healed

In my language we have a proverb atya okubirira omusawo tawona loosely translated as the one who fears to open up to the doctor cannot get healed. This proverb means if you hide anything from the doctor, you will not get full treatment and probably your healing will be half baked.

It’s more common to get to the doctor’s room and refuse to tell him symptoms which you think are minor. At times the minor symptoms may be the cause of major problem.

The first step in securing the correct treatment plan for your pain and discomfort is to tell your doctor about all your symptoms and any changes in those symptoms as the treatment progresses. Even if you feel that they are not related to your condition, your doctor needs to know about them. You should also be completely honest about your lifestyle. For example if there is any other drugs you use apart from the one prescribed, tell your doctor.

This information will be held in the stricter confidence and will only guide your doctor towards the most appropriate plan of care.

Tell your doctor

• When the symptoms started
• What they feel like
• How they are affecting your  life and
• What makes the symptoms better or worse

The more specific your explanation, the more helpful it is.
 

Love Life!

Ssebandeke Ashiraf

FOLIC ACID AND SICKLE CELL ANAEMIA

Sickle Cell Anaemia as seen earlier adversely affects the production and the quality of red blood cells. The cells have a shorter lifespan. This leads to increased folic acid losses. Today we focus on this vitamin and its importance. Let’s begin, Shall we?

Folic acid, also called folate, is a B vitamin. It is referred to as Vitamin B9. The name is derived from the Latin name foliage meaning ‘leaf’. This is because folate is found in highest levels in green leafy vegetables. Folic acid can be artificially synthesized. It is used in food fortification and manufacture of supplements.

Folic acid plays a key role in certain body functions. Folic acid is critical for nucleotide synthesis. It is essential for protein utilization and red blood cell synthesis. Folic acid works well with other B vitamins especially vitamin B12. Now let us look into each of these roles and consequences of deficiency in more detail.

·         NUCLEOTIDE SYNTHESIS. Folic acid is required for the synthesis of purines and thymidine. These are important for DNA synthesis. DNA controls cell division in growth and development. Folic acid is crucial for pregnant women during the first four weeks. This ensures proper development of the brain and nerves from the neural tube that is formed by the 28^th day of pregnancy. Folate is needed on in life to maintain the integrity of body tissues and repair. Folic acid deficiency in pregnancy leads to neural tubal defects like spina bifida in newborns. It is of great importance that all women of childbearing age take adequate folate (additional 400mcg aside dietary folate) regardless of whether or not they intend to get pregnant.

·         PROTEIN UTILIZATION. Proteins are made of many smaller units called amino acids. Folic acid is needed for the metabolism of various amino acids including glycine, serine and methionine. Folic acid, together with Vitamins B6 and B12 are important in methionine metabolism. Folate and B12 convert homocysteine to methionine while B6 converts homocysteine to cysteine. High levels of homocysteine are associated with vascular disease. The role of folic acid is cemented in the regulation of these diseases through homocysteine regulation.

·         RED BLOOD SYNTHESIS. As we saw earlier, folic acid is important for DNA synthesis. DNA controls the production of red blood cells. In sickle cell anaemia because the red blood cells are short-lived, the levels of folate in the body are often low. As a result, DNA synthesis is impaired and the red blood cells fail to divide well. They remain as large immature precursors of the red blood cells. This condition is referred to as megaloblastic anaemia. These cells have little haemoglobin. They cannot package and transport oxygen sufficiently. Because of the anaemia, one may be anxious, lack energy, have a poor appetite, stomach pains, and cracked lips. You may also suffer from depression. This deficiency severs the sickle cell condition because the red blood cell levels are already too low and crescent shaped cells are predominant.

We need to have a daily balanced diet to be provided with adequate folic acid. This is to prevent folate deficiency. Green leafy vegetables are highly recommended. Some good sources are spinach, cauliflower and sprouts. Whole grains, lentils and pinto beans can be included in the diet. Red meats like beef liver are rich in folic acid but should be eaten in minimal amounts. The red meats are rich in saturated fats hat are bad for our health. This is because they contribute to development of vascular disease. Folic acid is heat sensitive therefore we are advised to eat fresh, uncooked vegetables and fruits. Avocado, beets, sesame nuts (simsim) and cashew nuts are good sources of such. Enriched cereals are also encouraged.

While a balanced diet provides enough folic acid, your doctor or nutritionist may recommend that you take daily folic acid supplements.

This is to cover the losses due to red blood cell death as well as slow metabolism by the body. The supplement tablets should provide between 400-1000 micrograms of folic acid daily. Majority of  patients have a high-dose folic acid  prescription of 1000mcg(1mg) daily. In some cases a B-complex supplement may be given. This particularly true when one has vitamin B12 deficiency, pernicious anaemia.*Folic acid can clear the blood signs of B12 deficiency and hide the neurological signs masking the deficiency. Vitamin B12 is needed for growth and maintenance of the insulating myelin sheath around nerve fibres. Only a skilled professional can diagnose the nutrient deficiency. Self-diagnosis and advice from unskilled self-proclaimed experts are not advised. Well, that’s folic acid for you. Remember to take you greens, drink your water and exercise to stay in tip-top shape.

*The exact doses of folic acid taken by patients that hide B12 deficiency are still subject to research.

Love Life!!
Joyner

Overcome Fatigue without using Drugs/Medication

Sickle cell disease has debilitating effects on every aspect of a patient’s life, through their lives. Every part of the body and aspect of life is affected. Blood moves in every part of the body.

Fatigue is one of the top three symptoms of sickle cell disease that affected daily life.  It is common among sickle cell patients. In warriors fatigue is natural. The red blood cells life is short. Imagine you are doing a work which would have been done by 10 people a lone. You will get tired easily, that’s true. That’s what happens in the body of a person with sickle cell disease when it’s trying to keep pace with the destruction of red blood cells. The red blood cells in a person with sickle cell disease have a lifespan of 15-20 days and for a person without sickle cell they last for 120 days.

Fatigue is a significant effect facing many adults with sickle cell disease. There are many experiences ranging from general daily tiredness to episodic severe exhaustion. It can occur to the point of not being able to move, and you need to sleep all day. Some fatigue episodes do not have a consistent pattern and are not related to pain or hospitalizations.

In a number of cases insomnia and other sleep difficulties contribute to fatigue. Vicious cycle of insomnia further aggravates fatigue.  Think of a situation when you are feeling tired like a dead weight. Your mind is racing but your body won’t cooperate. You feel your body want to rest but sleep cannot come.

There are number of remedies that can help us overcome fatigue without using drugs.

Prevent fatigue

The first remedy is preventing fatigue is by avoiding it. When we were young they used to limit us on the amount of play episodes we had. But when we grow up we tend to over stretch our limit. You should know what much work for your body is. Also take breaks during your activities.

 Drink enough Water

Drink more water for better energy. Our bodies need a lot of water to stay hydrated. The more our bodies get dehydrated the more they become fatigued. Sometimes you feel tired simply because you’re mildly dehydrated. Drinking water is one of the easiest ways to hydrate your body. Drinking enough water a day you’ll feel better before you know it.

Reduce stress

It’s difficult to get completely over stress when you have sickle cell disease. Stress triggering factors are many but it can be reduced. Stress uses up a lot of energy. Try to introduce relaxing activities into your day. This could be listening to music, reading or spending time with friends. Whatever relaxes you will improve your energy.

Have a right diet

A good way to keep up your energy through the day is to eat regular meals. Eat fresh foods. The fresher your food is, the more nutrients it will contain

Also eat fruits and juice green vegetables, apples and berries. Raw honey every morning with a banana will help you throughout the day. Oranges gives a burst of energy.

 

Food Supplement

If you’re not getting everything you need from your food, you may want to consider taking a daily vitamin. Consulting with a nutritionist or homeopathic doctor could get you started on a nutritional supplement regiment. Make sure to talk to your doctor about any and all nutritional supplements you’re considering.

I have found out that exercising regularly, breathing and mediation very helpful in combating fatigue.

Most warriors experience fatigue whether young or adult. Some have gone ahead to believe that sickle cell disease and fatigue are twins. Fatigue happens at any time of the day. To some people they can get fatigued even when they have done nothing. You can even get fatigued while eating.

Do you experience fatigue? At what time of the day and remedies do you use to overcome it? Please share with us your views in the comments section.

 Love Life!

Ssebandeke Ashiraf

Sickle Cell Symptom #1- Anemia

Living with anemia has taught me a lot about pacing myself. Pacing myself means slowing down for the sake of my body.

For any Sickle Cell Warrior, Anemia is a lifelong symptom we have to live with. Living efficiently in a way that one is aware and conscious of their body. Many times, we are called lazy or unreliable because we are unable to do work that strains our bodies.

Personally, I would like to climb Mt Kilimanjaro before the year ends. This however may not be advisable the doctor says, because of my body's inability to carry enough oxygen throughout my body. And going to a place with very low oxygen levels, is really pushing my body and blood in ways that could cost me my life. So the doctor says. What exactly is Anemia?

Anemia is a condition in which one doesn't have enough healthy red blood cells to carry adequate oxygen to your tissues. Having anemia may make you feel tired and weak.

And because I have Sickle Cell Disease, there is constant deformation of normal red blood cells to sickle red blood cells which then leas to rapid destruction of Sickle cells. Hence the name Sickle Cell Anemia

Anemia is lifelong, starting in the first year of life as the fetal hemoglobin level falls. The average red cell survival is reduced from a normal of 120 days down to an average of 10 to 20 days in sickle cell anemia. This produces anemia, a high reticulocyte (immature red blood cells) count, and a large reproduction of red cell precursors in the bone marrow to compensate for the destruction of red blood cells. Other problems related to the anemia are jaundice/yellowing of eyes and skin (elevated indirect bilirubin), changes in bone structure, and a high lactic dehydrogenase. In later childhood and early adult life, pigment gallstones are very common, related to increased breakown of hemoglobin. These cause cholecystitis (inflammation of gall bladder) in many individuals and removal is advocated by many as soon as stones are documented.

How do you know you have Sickle Cell Anemia?

·         Fatigue

·         Susceptibility to infection

·         Delayed growth and development in children

·         Episodes of severe pain, especially in the joints, abdomen, and limbs

·         Jaundice (yellow skin and eyes)

·         Brown or red urine

·         Leg ulcers

·         Failure to thrive in infancy

·         Symptoms of gallstones

10003 Symptoms of Anemia

One thing to note is this, when one is Anemic, they have no sufficient oxygen circulation in the blood. Oxygen functions to sustain life and without it we are prone to many inadequacies due to a weakened the body.

The way the world treats Anemia is by using supplements that will lead to formation of new Red Blood Cells and Blood Transfusion of packed cells.

How i chose to bring balance to my body to avoid Anemia is through food. Food that build the Red Blood Cells and food that oxygenate the blood. You can learn more about this on an upcoming post that seek to enlighten on uses of food to manage Anemia.

Do you think I should still climb Mt Kilimanjaro?

Love Life!

Lea

SICKLE CELL SYMPTOMS & CLINICAL MANIFESTATIONS

How do you know one has Sickle Cell just by looking at them? How does Sickle Cell Disease look like?

I could say, jaundiced (yellow) eyes/skin, small physical stature, swollen abdomens etc. . But to truthfully answer your question, there is no particular way to tell if someone has Sickle Cell by just looking at them. Unless you're a keen observer and are very versed in the knowledge of Sickle Cell and its symptoms. Sickle Cell has no particular face.

Well, since it has no particular identifier, like any disease, there are definitely certain symptoms to look out for if you have Sickle Cell. Granted that human beings are different in there physiological make-up, these symptoms vary from one individual to the next. This means that, not everyone with Sickle Cell will exhibit the same symptoms. Different people may only experience a few or even in some cases none at all. In very rare cases does one person exhibit all of the symptoms.

Sickle Cell Symptoms

These clinical manifestations and symptoms result from changes of red blood cell deformability and fragility, increases in blood viscosity with blockage of small blood vessels, and red cell membrane changes contributing to hemoglobin polymerization(clumping), adherence of red blood cells to interior surface of blood vessels, and ingestion of foreign material by white blood cells. The end result is a hemolytic anemia, increased incidence of serious infection, and ischemic damage (damage caused by restriction of blood supply) throughout the body. In individuals with Sickle syndromes, there is a life-long risk of having complications,  however, there are specific ages when many of the manifestations develop. The more common problems in Sickle Cell syndromes will be presented by the age usual onset.

Early Symptoms
The majority of infants are being diagnosed at birth by newborn screening. The symptoms occurring in the first few months of life in infants with sickle cell syndromes are non-specific and include jaundice, irritability, colic, failure to thrive, fever, nausea, and vomiting. Findings include hepatosplenomegaly (simultaneous enlargement of live and spleen), pallor (unhealthy pale appearance), and heart murmurs. Unfortunately, undiagnosed infants may present with overwhelming infection as the first manifestation of the illness in the first few months of life.

Other Symptoms

• Anemia
• Sequestration Episode
• Aplastic Episode
• Infections
• Dactylitis : The Hand-Foot Syndrome
• Strokes
• Priapism
• Growth & Development
• Pain : Acute and Chronic Pain
• Retinopathy
• Nephropathy
• Pulmonary Complications
• Leg Ulcers 

In the next couple of weeks we will discuss each of the different symptomatic expressions of Sickle Cell. We will go into the causes of said symptom and how to manage the symptom.These are the most common symptoms which occur in many recorded cases. Personally, I have experienced very few of the symptoms above and also other symptoms that are not on the list. I'll be sure to give a brief on my experiences as we go through each of the symptom.

Sickle Cell Clinical Manifestations 

Have you experienced any of the symptoms above? Let me know your experience and how you were able to manage it. And if you feel I have missed something, comment below and let me know what I need to add onto the list.


Love Life!
Lea

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

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

WHAT IS SICKLE CELL DISEASE ?!

Most of us cannot remember the 2 paragraphs covering Sickle Cell Disease in high school biology, let alone half of the content that was skimmed through.

Well I remember that class. They spoke about something I was personally experiencing everyday of my life. I was afraid that i would be found out. My deep dark secret that wasn't so secret would be found out. Well, that was back then.

For those who still remain bamboozled about this disease Lea keeps speaking of, this is for you.

Imagine living with the barely half the amount of blood(HB) meant for a normal person. Imagine having frequent pain attacks in different areas of your body that can only be remedied by expensive opiate based painkillers. Imagine being pronounced dead before death even knocks by your door. And to add insult to injury, there are no adequate facilities and support structures for people living with Sickle Cell. Moreover, it's inconclusive as to how many people actually carry the Sickle Cell gene and the disease in Kenya.

Sickle Cell Disease has been labeled so many things, I fail to keep track. Some think it’s a form of yellow fever, Leukemia, Lupus, Hemophilia, Malaria, Witch craft, HIV, Epilepsy etc.  Well its certainly not that. Its funny how people tend to judge and label that which they don’t understand so as to provide some sort of meaning to it. However in most cases, that which is not properly defined will continue to carry a misconstrued interpretation until such a time when knowledge is made available. This is that time people!

So..

Sickle Cell Disease is therefore a group of genetic/inherited red blood cell disorders. Normal red blood cells are round like doughnuts, and they move through small blood vessels in the body to deliver oxygen and nutrients. Sickled red blood cells become hard, sticky and shaped like sickles used to harvest rice. When these hard and pointed red cells go through the small blood vessels, they clog the flow and break apart. This can cause pain, organ damage and a low blood count, or anemia. If you didn't know this already, let me be the first to tell you. I have Sickle Cell Disease and truthfully, its not as bad as it looks or sounds. 

Sickled Red Blood Cells

Okay. So what then makes the red blood cells sickle?

Simple, DNA. Before I take you back to school, lets clarify on some basics. 

There is a substance in the red blood cell called hemoglobin that carries oxygen inside the cell. One little change in this substance hemoglobin causes the hemoglobin to form long rods in the red cell when it gives away oxygen. These rigid rods change the red cell into a sickle shape instead of the round shape. 

That change that causes the Sickle Cell deformation is caused by a single change of the amino acid building blocks of the oxygen-transport protein, hemoglobin. We all (well some of us) know that the molecule, DNA, is the fundamental genetic material that determines the arrangement of amino acid building blocks in all proteins including hemoglobin. If this is the case then, the glitch comes in when the arrangement of the amino acids is screwed up. In this particular case of Sickle Cell, one of the amino acids in the protein hemoglobin is miss-arranged (screwed up). Valine is at a position meant for Glutamic acid. Well this tiny and seemingly insignificant change causes a big difference in the morphology of hemoglobin to cause the appearance Sickle hemoglobin in the red cells. Sickle hemoglobin exist as isolated units in red blood cells when they have oxygen. When this Sickle hemoglobin releases oxygen, however, the molecules tend to stick together and form long chains or polymers. These rigid polymers distort the red cell and cause it to bend out of shape to a crescent-like shape.   This is what causes the sickling. 

Do I have Sickle Cell Disease? How did you get Sickle Cell Disease or trait?

I inherited the abnormal hemoglobin from my parents, who are carriers of the Sickle Cell trait. One can also get it if their parents have Sickle Cell Disease. The chances vary, however it totally depends on how genetics work out. Like I know that I may give birth to normal kids, Sickle Cell carriers or children with Sickle Cell Disease. It’s all uncertain. Please note, you cannot catch/contract it. You are born with the Sickle Cell hemoglobin and it is present for life. If you inherit only one Sickle gene, you have Sickle Cell trait. If you inherit two sickle cell genes you have Sickle Cell Disease, like me. 

Sickle Cell Gene Diagram

I am lost now. I don’t understand this Sickle Cell Trait term?

Sickle cell trait is a person who carries one sickle hemoglobin producing gene inherited from their parents and one normal hemoglobin gene. Normal hemoglobin is called type A. Sickle cell hemoglobin called S. Sickle Cell trait is the presence of hemoglobin AS. People who have Sickle Cell trait are known as Sickle Cell Carriers. They carry the one Sickle hemoglobin producing gene and in many cases don’t experience the symptoms of a person with Sickle Cell Disease. This however is dependent on certain physiological factors that when adverse, may trigger these symptoms.

In Kenya, very few people know about Sickle Cell Disease and even fewer know there Sickle Cell status. Most people are shocked into knowledge when they give birth to children with Sickle Cell Disease and are rendered helpless and misinformed on how to move forward.

This is the first step towards empowerment. Let me know if you have Sickle Cell Disease or if you know anyone with Sickle Cell Disease? Tell us how you came to learn about the disease.

Lets chat in the comment section below as we wait for the next series that will inform you how to know your SCD status and so much more.

Until then,

Love Life!

Lea