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

Letter to A Warrior - Faith

Beloved Warrior,

In life, we have all weaved through and past hardships of different magnitude.
We may have a lot things coming against us, and that life grows very difficult and pressure turns up.
Worse off is the more we pray the worse it gets.

For instance:
We are doing the right thing but getting the wrong results
We are treating people kindly and respectfully but they are being unkind to us.
We want to give up on our health life because illness is bringing us down.
Beloved Warrior

In such situations, it is easy for us to give up, be robbed off our purpose in life, and loose on our energy, zeal, and enthusiasm of pursuing our good God given dreams in life.

Times might grow tough, but remember that there are rewards for staying strong in faith.
Faith is always and everyday in the present. Have faith that amidst our setback, The most High is preparing a bigger comeback for us.

10003 Letter to Sickle Cell Warrior

Having faith that in life, disappointments come and go, but The Most High's favor is for a lifetime.
Have faith that God is in complete control of your situation, and however big or hard it seems nothing is impossible.

Next time we find ourselves stuck and stranded, my message from my heart to your hearts is that God is building a new life into your dreams, and if we are to learn how to keep our faith and get up everyday expecting God's favors, then we shall in due time see witness the amazing working wonders.

Have a strong faith and we shall overcome every obstacle, defeat every enemy, and see every dream, every promise God has put in your heart come to pass.
Even through this Sickle Cell journey; Keep your faith, it is in the present.

Love Life!

Pewa George

SICKLE CELL WARRIOR #15

Sickle Cell Warrior #15

Hi 

My name is Roy Omollo Otieno and I am 11 years old student in Kisumu county. I am day scholar due to having Sickle Cell Disease and very grateful that teachers and fellow students help me much to live a normal life while in school. I like to play with other kids normally but end up getting tired quickly so I watch on how much I do when it comes to activities. I love running short distances to keep fit and I always eat healthy vegetables for energy. 

I would like to advise young Sickle Cell Warriors like me to ask for fruits and vegetables because we need a lot of energy to play and grow up strong.

Love Life!
Roy Omollo.

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

VITAMIN C - Ascorbic Acid

Now, if you just started singing the nursery rhyme “‘A’ is for apple, ‘B’ for boy, ‘C’ for cat…where did ascorbic acid come in?”, you must have been that guy dozing in front of me in class or that chic passing notes about so & so’s crush on nani. So before you start questioning the title & I’m accused of speaking jargon, let’s talk about vitamin C a.k.a (also scientifically known as) “ascorbic acid” –the word comes from the New Latin word "scorbutus" meaning scurvy.

Vitamin C is a water-soluble vitamin that we get from our food. Our bodies can neither make vitamin C nor can they store it for later use. Which is why we need to ingest as much of it as possible. However, some animals (mostly carnivores) can make their own vitamin C. This is why lions, leopards, cheetahs & the other cats do just fine without fruits & veggies.

Good sources of vitamin C are fresh fruits and vegetables, especially citrus fruits (like oranges, tangerines, grapefruit & pineapples), strawberries, tomatoes, sweet potatoes (ngwaci), sweet bell peppers (hoho nyekundu na manjano), kales (sukuma wiki) and potatoes. Vitamin C can also be artificially made into tablet supplements. I recommend getting vitamin C from a diet high in fruits and vegetables rather than taking the tabs. Supplementation, especially when not prescribed by a health expert can lead to toxicity/ over-dosage of vitamin C, which in turn has its consequences especially in sickle cell disease.

Vitamin C is one of the most popular micronutrients known to man. Even before its discovery in 1932, nutrition experts back in the day recognized that something in citrus fruits could prevent scurvy, a disease that killed as many as two million sailors, pirates and others who spent long periods of time onboard ships between 1500 and 1800. When the voyages lasted longer than the supply of fruits and vegetables, the sailors began to suffer from vitamin C deficiency, which led to scurvy. Scurvy is known as the bleeding gums disease, because vitamin C helps to make collagen, a tissue needed for healthy bones, teeth, gums and blood vessels. (P.S: if you have any bleeding gums, don’t panic! There is more to scurvy & probably all you need to do is change your toothbrush).

But I’m sure we’ve all first heard of the vitamin when it came to preventing or treating the common cold. Let me refresh your memory, remember when you had a cold & your mum made you drink that bitter concoction of lemon, ginger, garlic & honey (if you’re lucky)? Yeah, that drink she made you gobble down while holding a slipper in her hand, because it worked for her mum & mum’s mum & the shosho of her mum’s mum’s dad? It actually didn’t begin in your lineage, but in the 1970s when Chemistry and Peace Nobel laureate, Linus Pauling promoted daily mega doses of vitamin C (the amount in 12 to 24 oranges) as a way to prevent colds and some chronic diseases. I don’t know about you but I’d rather have shosho’s drink than a dozen oranges in a day…yikes! My taste buds are already getting zingy.

There’s no question that vitamin C plays a role in controlling infections & maintaining proper immune function. We know this is very very important in sickle cell disease. The question is, do we need lots of vitamin C to keep you healthy?

No. Vitamin C’s cold-fighting potential certainly hasn’t panned out. Small trials suggest that the amount of vitamin C in a typical multivitamin taken at the start of a cold might ease symptoms, but for the average person there’s no evidence that mega doses make a difference, or that they prevent colds. It doesn’t sound like it’s living up to its legendary health boosting name when it comes to sickle cell disease, is it?

That’s because most people don’t know it is also a powerful antioxidant that can neutralize harmful free radicals (like germs, viruses, toxins) & protect red blood cell membranes against oxidative damage. Research has shown that sickle cell warriors have low levels of vitamin C in their blood as a result of the disease. If you have low vitamin C (the antioxidant) in your blood, then there will be an increased vulnerability of sickle cells to oxidant damage by the free radicals. This vitamin even goes the extra mile to regenerate other antioxidant buddies like vitamin E. More so, vitamin C increases the absorption of iron from foods in the body; thus replacing any lost iron from sickling of red blood cells. Super! Right?

You can always get the most of this vitamin out of foods by the way you prepare your meals. Since it’s water-soluble, it can easily leach out of fruits & vegetables when washing or cooking. As Kenyans, we mostly have the habit of buying thinly sliced mboga from the soko and immediately giving the shredded strips a thorough wash when we get home. As if that is not enough to get rid of the bacteria we’ve pictured, we cook the veggies until they lose their green crunchy nature to a swampy murky appearance. When we wash our veggies & fruits after they’ve already been sliced, we increase the surface area for their loss through the water being used. And when we over-cook our veggies, the heat evaporates their nutrient-dense fluids; we might as well be eating the empty calories in sweeteners & what not. Other tricks to get more vitamin C from food simply involve choosing fresh foods to eat. For example, a fresh-squeezed orange juice is a better pick than ready-to-drink orange juice, because the fresh juice contains more active vitamin C & no added chemicals or sugars. Better yet, eat the whole fruit! You’ll benefit from the fiber too.

Do you see what’s going on here? Nature is once again curing what ails us. Not the doctors, not the pills. The earth was designed with built-in solutions to our health problems. As our bodies crave healing, the seasons provide all the natural medicine we need. Keep it healthy!

Love life!

Sharlene M.M.

Sickle Cell Anaemia Symptom #3 - Leg Ulcers

I decided to speak about leg ulcers this week because of my very good friend Rachel. Rachel has had leg ulcers for a couple of year now and finally today, she got the opportunity to have a grafting procedure done on the leg ulcers.

What are Leg Ulcers?

Like many other Sickle Cell warriors, leg ulcers are a big pain, physically and visually. Leg ulcers are acute or chronic wounds that occur on the lower extremities around the ankle, in areas with less subcutaneous fat, thin skin, and with decreased blood flow. They are open sores marked by a complete loss of the top layer of the skin (epidermis); which does not tend to heal quickly. Leg ulcers are a chronic complication for people living with sickle cell disease. Ulcers tend to be difficult to treat successfully, healing slowly over months or years. They can severely disrupt quality of life, increase disability, require extended absence from the workplace, and place a high burden of care on healthcare systems.

They may be classified as acute or chronic according to their duration, however, there is no consensus as to a specific length of time to define chronicity. An acute ulcer usually should heal in less than a month. Among chronic ulcers, a duration of six months seems to define the most recalcitrant ulcers. It is not uncommon for ulcers to last many years, often closing and re-opening repeatedly. Leg ulcers are painful and often disabling complications of SCD. They tend to be indolent, intractable and heal slowly over months to years. The pain may be severe, excruciating, penetrating, sharp and stinging in nature. In most patients, opioid analgesics are needed to achieve some pain relief.

In the case of Rachel, her leg ulcers prevented her from doing a number of things including walking and/or standing for long hours. Aside from the fact that both of her legs were in bangages, the severe pain during the night was one of the many things she endured. The physiological manifestations of leg ulcers prevents many warriors from living normal pain free lives. I can only imagine what having a persistent wound does to someone's psyche.

Causes of Leg Ulcers

Most of the causes of leg ulcers in Sickle Cell Warriors especially is the lack of blood flow to the skin in the lower extremeties of the legs. Another huge fact is the problem of low immunity which prevents wounds to heal properly and timely. Other major causes are listed below.

• Obstruction by dense sickled red cells
• Venous incompetence (impaired blood flow)
• Bacterial infections, trauma and inflammation
• Abnormal autonomic control with excessive vasoconstriction when in the dependent position
• Localized blood clots
• Anemia with decrease in oxygen carrying capacity
• Decreased nitric oxide bioavailability leading to impaired endothelial function
• Arteriovenous shunting that deprives the skin of oxygen
• Lower musculoskeletal exercise tolerance and oxygen consumption due to the lowered oxygen supply to the exercising muscles in SCD patients

#10003 Sickle Cell Symptom #3 - Leg Ulcers

Management of Leg Ulcers

Management can only be advised depending on how severe the leg ulcer is. This is usually determined by the size, depth and duration of the particular leg ulcer manifestation. The management of chronic leg ulcers in sickle cell patients can be difficult and protracted. It often results in significant pain, limits physical activity and potential employment, and reduces the quality of life for these patients.

Coming back to Rachel, her leg ulcer was chronic. It was deep, relatively large and had persisted for a couple of years. In her case, the option given by the doctors was to administer a skin graft on the wound to help in the healing process. This is because it is a much better option for her since the wound has not been able to heal on itself. However, with the help of a skin graft, healing and closing up of the wound is possible.

With regards to pharmaceutical intervention, studies show that arginine butyrate, RGD peptide, L-cartinine report change in ulcer size However, RGD peptide significantly reduces ulcer size and has reported incidences of complete wound closure. Local treatment with either surgical or sharp debridement, hydrogels, enzymatic digestion, or topical gm-CSF have been recommended but responses are slow and often incomplete. 

1. Systemic therapies with zinc replacement that help with wound healing and use of antibiotics to prevent and control bacterial growth and infection of the ulcer.
2. Regular cleaning and dressing of the wound is highly recommended. This helps greatly to improve circulation and treat any rising infections on the wound. Weekly cleaning to remove debris and dressing with clean bandages help to heal the wound quickly.
3. Transfusion therapy has been used to improve oxygen carrying capacity as well as to decrease levels of hemoglobin S. It has also been used in preparation for surgery, and in the treatment of non-healing leg ulcers. However, it is associated with significant alloimmunization and iron overload which requires aggressive chelation therapy.
4. Bed rest and elevation to reduce edema (accumulation of fluid) could be beneficial in the treatment of lower extremity wounds. This helps prevent collection of fluid and bring it back to the heart. Elevation also reduces pressure to the blood vessels on the extremities and reduces swelling of the leg around the affected area.
5. The use of compression for sickle cell ulcers with reference to the use of either Unna's boot or elastic compression bandages and absorbent dressings. This helps keep the blood pressure regulated but not stopped.
6. And then of course the use of skin grafts to influence wound healing and wound closure.

The use of aggressive medical, wound, and physical therapeutic management is recommended for the successful healing of a chronic wound and leg ulceration in patients with SCD.

Prevention of Leg Ulcer

Since it is clear that leg ulcers are majorly caused by poor circulation and immunity, we can easily be able o prevent their occurrence especially among Sickle Cell Warriors.

Regular light exercise that is comfortable for the warrior is recommended. This may include but not limited to, walking, yoga, swimming or anything that promotes movement and circulation of oxygenated blood within the body.

Increasing intake of nutritional foods especially those that promote body detox and promotes wound healing such as green vegetables and fruits. These foods help build one's immune system to keep off bacteria and infection, improve wound healing and increases overall body energy.

Vitamin C helps in the healing process and increase in blood circulation. Vitamins E, B complex, Zinc and amino acids also help in healing and circulation. For blood clotting, Vitamin K is a huge factor. Being vigilant in your diet will help quicken the healing process. Dark green vegetables and fruits have a dense wealth of nutrition that help oxygenate blood among other things. Do stay away from sweets, refined sugars/carbs and animal protein that reduce and even stop the healing process.

As far as Rachel is concerned, we wish her a full recovery post-surgery and healing that will give her back a full life that she deserves.

All the best Rachel.

Love Life!

Lea

Ref

Pathophysiology and Multidisciplinary Management of Leg Wounds in Sickle Cell Disease: A Case Discussion and Literature Review 

Leg Ulcers in Sickle Cell Disease 

Treatments for leg ulcers in people with sickle cell disease