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

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

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

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

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