I WAS ASHAMED, ANGRY AND DEPRESSED ABOUT HAVING SICKLE CELL

In life we encounter numerous challenges or obstacles as many people call them. Some obstacles are difficult to remove from your way and move on while others are difficult to remove and even tell the world that you have the obstacle.  But living life when you know nothing will change. Living with sickle cell disease is one of the biggest obstacles which comes early in life and continue until you go the world beyond. The most difficult scenario is when you cannot tell even your best friend that you are at war with sickle cell every day.

The famous poet Audre Lorde said, “When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it’s better to speak.”

It’s difficult for someone living with sickle cell to admit and declare it publicly due to stigma and discrimination, just like in the case of HIV/Aids. The famous poet Audre Lorde said, “When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it’s better to speak.”

I know what it’s like to feel like you are alone in the struggle to be well, maintain, manage and cope with having sickle cell.  I understand the constant battle to live a “normal” productive and uninterrupted life. Likewise, I also know it can be different to keep a positive attitude - to focus on what is good and right in your life instead of the pain and what you may feel is wrong in your life. It’s not easy to be of sound mind and good spirit when you are in pain. Sometimes it’s hard not to focus on what you are feeling at the moment.

There are “those days” when you feel as though the burden is much too, heavy – days when you grapple with who you really are and how you really live and cope with sickle cell.

Even on a good day, no matter how well you may happen to be, it can be hard to be hopeful or thankful that, at least for the moment, sickle cell is not in control. There are “those days” when you feel as though the burden is much too, heavy – days when you grapple with who you really are and how you really live and cope with sickle cell.

Only someone who has sickle cell can ever really know what it’s like to live with it. Sickle cell can cause havoc on the psyche; it’s so much more than the physical - it’s the emotional and mental as well. It was revealed to me in a recent conversation that even though sickle cell affects us differently, we are so much more alike than not. We have the same stories and we share so many similar experiences. None of us are ever really alone in our thoughts and feelings. I am so grateful for social networks like Facebook, Instagram, Whatsapp, and Twitter.

I thought it so unfair that I had to endure living with something that caused me so much pain in every single area of my life.

Back then, during my loneliest moments, I was ashamed, angry and depressed about having sickle cell. I thought it so unfair that I had to endure living with something that caused me so much pain in every single area of my life. I hated acknowledging sickle cell in any way, much less talking about it. I have come a long way from being the self-pitying, insecure, angry individual I used to be.

Today I stand strong and unashamed. I can talk about sickle cell openly and honestly. I thank God that today, I know that I am not defined by sickle cell and I am not alone. I share my journey and experiences to let my fellow “soldiers”/”warriors” know that they are not alone either. I need my fellow soldiers to know that there isn't a thought, concern or feeling that can’t be identified with somebody else’s.

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 #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

Healthy Food Pyramid & Healthy Eating Plate

Have you ever wondered how the food you eat affects your body? What food makes us healthier, smarter or stronger, especially when you have a condition such as Sickle Cell Disease? How do we make the right choices in eating healthy with all the billions of food types in the world? You are not alone in asking these questions & fortunately, nutritionists & other health experts have come up with a universal guide to making decisions in eating healthy –the Healthy Pyramid and Healthy Eating Plate.

Healthy Food Pyramid & Eating Plate courtesy of Harvard University

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