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!

Sickle Cell Warrior #13

10003 Sickle Cell Warrior #13

Lea
26 Warrior Years

"Sickle Cell is the best thing that ever happened to me.
It is not about the pain, the stigma and the depression. Its about what I have gained experiencing all of it. My ability to experience pain has increased my capacity to feel beyond that which many people can. And for me, stigma and depression are a constant test in my personal journey of self acceptance and self love. The daily physical , emotional and mental battles have made me the person I AM today, they prepare me to win this war I was born into. Everyday is an opportunity to live, love and learn. To those Sickle Cell Warriors who have yet to see their beauty, I urge you to trust the process, as messy as it is., and know that nothing happens by chance.

This title Sickle Cell Warrior, is a true priviledge."


Love Life!
Lea

Sickle Cell Warrior #12

10003 Sickle Cell Warrior #12

Caroline
23 Warrior Years

I'm a lover of all things life who likes to make friends and make merry.
Aside from that, i'm a Sickle Cell Warrior. Being a warrior and achieving a lot in life is somewhat an impossible venture but the far I have come shows it is possible. One can be whatever he/she wishes to.



Love Life!

Caroline

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

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

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

Sickle Cell Warrior #7

10003 Sickle Cell Warrior #7

Kathleen N.
26 Warrior Years

A recently graduated warrior who has surparssed many obstacles and an absolute inspiration to many. Kathleen is an older sister to two younger siblings who she always carries along to any exciting activities she thinks they might benefit. Her bond with them and vice versa is nothing new especially in families where warriors are supported. Kathleen, is unique in her role as an older sister. As a warrior she directly influences her sisters through the life she lives. Her deliberate efforts to guide and instruct in the ways of a Sickle Cell warrior strategically positions her as a great role model. Many may choose to shy away from speaking about their lives with younger siblings for fear of looking weak, Kathleen shines with confidence.

Words of Kathleen

“Being a warrior is not a life sentence, it’s a chance to appreciate life in every aspect big or small. I am more aware of the phrase ‘life is too short’ so I live mine to the fullest. Being a warrior makes me stronger than I give myself credit. I am strong, I am a warrior. I am 26 years and stronger than ever. I am moving on and I love every step I make.”

Catch up with Kathleen on her Facebook page HERE



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

Sickle Cell Warrior #6

10003 Sickle Cell Warrior #6

Donald O..24 Warrior years

It is difficult to put in words that which deserves more than words.
In such a situation when one is rendered speechless, silence is best observed.

Well., most of you who have the pleasure to know Donald may be familiar with his "larger than life" persona and his very eccentric ways of doing things.

I had the pleasure to interact with Donald a couple of years back at a Sickle Cell community meeting in Agakhan. Back then (2012) my Sickle Cell circle of friends wasn't as diverse as it is now and the few people who spoke out about Sickle Cell disease were considered to be brave and mighty titans. Donald was one of these titans.

True to the title, Donald has surpassed various perceived "limitations",mind and body. As sickle cell warriors, we are conditioned to restrict ourselves within the lines of the coloring box. We take what we are told we cant do as gospel truth and many of us live miserable unfulfilled lives. Donald seeks to break those barriers and create new ones, on his own terms. He has been working out and building body mass for almost 2 years now and still going strong. He started slow and grew and he continued to learn and understand his body. He takes care not to over exert himself and stress his body. Aside from his physical body; i believe that in order to see change in the physical, one has to first shift his mindset from the old conditioning of the mind to a mindset that makes everything possible. A warrior needs to have the knowledge on what works for him/her  and the wisdom to apply that knowledge in their daily lives.

Donalds words
"Inability and Disability is all in the mind. What you conceive in your mind comes to be. Pray daily because its the source of power and have faith because everything happens for a reason."

On a lighter note, Donald is a hit with the ladies though fortunately or unfortunately he only holds dear one lucky lady in his heart. Catch up with Donald on his Facebook and continue the conversation on Sickle Cell.

Love Life!
Lea

Sickle Cell Warrior #5

10003 Sickle Cell Warrior #5

Hi

My name is Caroline Omino. I'm a 28yr old Facilitator/Rapporteur at KEWOPA 

“I am the only warrior in a family of five. My siblings and my parents have always been supportive and understanding. It is very important to have a support system that understands what Sickle Cell is all about.  That way in a crisis and any other time they can help you. As a warrior it is important to understand your own body and type of strain you have. Management is key to being healthy. I eat healthy, exercise and drink lots of fluids but most importantly, I carry on and live like a normal person.” Through my passion in community service, I hope to continue creating awareness around Sickle Cell Disease by encouraging others to speak out and share their experiences and lessons with regards to living with the disease.

Join me on FACEBOOK as we continue the conversation around Sickle Cell Disease, and share stories that will initiate change for those who come after us.

Love Life!

Caro 

Sickle Cell Warrior #4

10003 Sickle Cell Warrior #4

Hi

My name is Frida Odee and i'm 25 years old. I am an independent social researcher also studying media, culture and society. Most importantly, I am a Sickle Cell Warrior and I hope to eventually become an accomplished social scientist. I did not know that I had a form of Sickle Cell until four years ago. I was relieved to find out what had been bothering me after years of being sickly. I am a warrior because I hope to inspire and spread awareness on Sickle Cell Disease and let other people know they are not alone.”

Talk to me on  TWITTER and lets continue the conversation as we create awareness of Sickle Cell Disease on 10003 Warrior Project .

Love Life!
Freda

Sickle Cell Warrior #3

10003 Sickle Cell Warrior #3

Hey there, my name is Catherine Odenyo and I am 29 years old. For all those years, I have lived with pain that can’t be explained in words, but each and every moment I have gotten to learn my body more. I didn't know I was a Warrior until I was 18, it was a difficult moment. Now that I know, I have to keep moving forward with hope and joy. And YES! I am a Warrior because I’m still here fighting and haven’t given up.

Love Life!

Catherine

Sickle Cell Warrior #2

10003 Sickle Cell Warrior #2

Hey there, my name is Fredrick Oywer and I am a 22 year old business Information Technology student. I have lived with the disease my whole life and despite the challenges it comes with, I have not let it be a hindrance to my life or even the way I live it. Growing up, I always participated in the same activities that my school mates engaged in and I truly enjoyed my childhood. Now, as a young adult, I still live my life to the fullest and certainly am thankful to God for all my friends and family who have been with me throughout.

Catch up with me on Facebook and let's keep the sickle cell awareness conversation going.

Love Life!
Freddy.

Sickle Cell Warrior #1

10003 Sickle Cell Warrior #1

Hey there? My name is Cecilia June. I am 18 years old and my ethnic background is Dholuo. Why I mention where I am from is because as other Warriors continue to share their stories, you will find a similarity of ethic backgrounds. Sickle cell does not have any tribal link but instead, it affects people mainly from malaria endemic regions. I love to sing and it brings me a lot of joy and peace. 

Sickle cell is real, yes, and I found myself in that situation. I figured it is God's plan, you never know with some things *laughs*. I have accepted myself the way I am because no matter what, I am beautifully and wonderfully made by the Creator. I am not complaining though, and what keeps me going is God and the support of my family.

If you know you have sickle cell, do not think that that is the end of you! Not at all. Instead, be yourself, speak what you think is right, have fun and enjoy life because you are a Warrior. Some situations in life happen so as to give us a different view point of the world. Without our differences, we would all be the same. I figure that is boring. Though sometimes life may seem hard, just keep going and trust in God and thank Him because He is the life giver.

Despite my challenges of medical care, school and health insurance,I am currently studying and fully intend on sitting for my Kenya Certificate of Secondary Education (KCSE) at Korogocho Glory Secondary School. My dream is to become a doctor in order to help in championing the cause of Sickle Cell Disease. 

No matter where you are, whether 'rich' or 'poor' your dreams are valued and valid: go out and reach for them. I know mine are and as such, I am reaching out for them. 

My school address is Korogocho Glory Secondary School, P.O. B ox 4243-00200 Nairobi. A success card would be cool :)

Love Life!

Cecilia