Showing posts with label sickle cell disease. Show all posts
Showing posts with label sickle cell disease. Show all posts

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 #14

10003 Warrior Project Sickle Cell Warrior #14
Photo Credits : Paul Masamo

Hi, 

My name is Joy Risper Omondi, I am 6 years old and I live and study in Kisumu County. I am the first born in our family and I have one brother who is almost 2 and also a Sickle Cell Warrior. I live with my parents and due to having Sickle Cell Disease I always feel like my parents are discouraged by everything. They find it too much to take good care for me and my brother but they keep supporting and comforting me when in crises. I don't really understand what Sickle Cell is, all i know is I get sick a lot. The doctor has not explained what it is, my parents tell me it has no cure. I only can attend schools nearby my home for my parents’ fear of attacks while in school. I always live in fear of who will take care of me when I grow up like my parents do currently.  
As a young child I would like people living with Sickle Cell Disease to be treated equally and be given great medical care to enable us live a healthy normal life. 


Love Life!
Risper


Sickle Cell Symptom #3 - PAIN

This is a story of pain.
Have you ever been in so much pain that you call out to the gods to take your life?
Well, for 23 years I've been living with this kind of pain.

My earliest memory was of feeling this tightness in my chest. At 4 years old, diagnosed with Sickle Cell Anemia and admitted for Pneumonia, I didn’t know what this discomfort was. Feeling the weight of the world on my chest, pulling and tugging from either side, I could not fully understand why my body was punishing me this way. Breathing was strenuous and uncomfortable, but all I wanted was someone to tell me all will be well, and that I didn’t have to feel this way ever again.
But like the many other Sickle Cell crises to come, I was given a combination of pethidine and morphine, very heavy pain medication that put me immediately to sleep as if the pain never existed. This is the kind of experience Sickle Cell warriors go through. Living in post trauma and constant fear of not knowing when this pain will come and if you'll pull through to the other side of a pain free body.

PAIN - Sickle Cell Crises

Pain episodes (crises) can occur without warning when sickle cells block blood flow and decrease oxygen delivery. This damages the cells in the affected tissue, resulting in the tissue becoming swollen, which irritates nearby nerve endings. People describe this pain as sharp, intense, stabbing, or throbbing. Severe crises can be even more uncomfortable than post-surgical pain or childbirth.
Pain can strike almost anywhere in the body and in more than one spot at a time. But the pain often occurs in the
  • Lower back
  • Legs
  • Arms
  • Abdomen
  • Chest
  • pelvis
  • ribs
  • spine
Most pain episodes do not have an obvious reason for their occurrence.  But here are some possible causes and things that your child should avoid if possible:
  • Swimming in cold water
  • Being out in cold weather
  • Getting too hot
  • Getting dehydrated from not drinking enough fluids
  • Colds and infections
  • Overdoing it—not getting enough sleep and rest
  • Drinking alcohol or smoking
  • Menstruation (getting your period)
  • Stress
  • Being around second-hand smoke 

Treating Pain at Home

Remember:  pain is a sign that something is wrong. Firs identify the cause of pain or the trigger and control or eliminate it. Pain is best treated using a variety of non-drug treatments along with medication
For example, you may need to guide yourself by using relaxation techniques, even if you're already familiar with how to do it. Other examples of non-drug treatments include massage, hot or cold packs, relaxation and guided imagery, distraction, music, food remedies and also reading to yourself. 
In addition one should drink lots of water and take pain reducing herbal treatment and foods.


10003 Natural PainKillers

To all Sickle Cell Warriors, no one can claim to know more pain than you. However I am here to urge you that even though pain is what you leave with, it doesn’t have to dictate the way you live your life. Don’t let the discomfort dull the light in your life and destroy the great parts that make us who we are; our ability to be tender with ourselves and humanity and the clarity to always find hope
I have been able to turn pain into a pillar of strength. By understanding that I am made stronger by it, I use it as a motivator to better my health and life. Pain is a signal and an indicator that the body gives to show us there is something wrong, and we need to heed and listen to rectify that which is causing our bodies to scream in pain.

I have lived 3 years now without severe debilitating pain. I still experience pain here and there but manageable pain. In this journey of ascension to a healthy pain free body, I take care of my physical, emotional and physiological body through what I consume. This is due to consuming a healthy organic and natural plant based only diet, to deliberately allowing high positive wholesome information to be fed into my mind. The conscientious choice of only feeding my body life giving, high frequency and positive energy has kept me medication and hospital free for 3 years now.
Start today, start now.  Uplift yourself by the choices you make. Don’t let pain control the direction of your life, let it be an indicator for making better choices in how you live your life. Take a deep breath and let it go!

Comment below and share what your understanding of pain is and how you manage it.



10003 Pain Quote. Photo Credit: Mutua Matheka


FLUIDS



Hydrate! Hydrate!! Hydrate!!! Today we look at why we need to take enough water every day. We’ve all heard that water is life. This is because while we can survive for weeks without food, we can stay only or survive about a week without water depending on the environmental temperatures. For this reason we need to replenish the water we lose from our body. 




How is water used in the body? Water is a medium for various biochemical reactions. It is part of some reactions especially those that produce energy. It lubricates cells, tissues and joints. It acts as a shock absorber for our brains and spinal cords. Water is necessary for temperature regulation through sweat and respiration. Water forms saliva needed for digestion. It forms tears that clean our eyes. Water also transports nutrients, waste products and hormones around the body.
In sickle cell anaemia, it is important to take enough water to prevent pain crises. The condition also affects the kidneys which are the organs that used to excrete waste products through urine. The kidneys purify our blood so that it is free from toxic compounds. There is slightly more urine production with the sickle cell condition so more water is needed to replace that lost in urine.
To ensure that we have enough water in the body, at least 8 glasses of water daily are recommended. This is about 2litres of water daily!!  It is important that the water we drink and use to cook and clean is safe to prevent water-borne infections. Tap water is treated by the public water systems to remove hazards. Disinfectants like chlorine are used to kill microorganisms. However, the water should be boiled or treated accordingly using chemicals to ensure safety. When buying bottled water, make sure that it is certified by authorities. The source is also important as sources near agricultural areas may be contaminated by chemicals. As taking plain water can get boring, you can add a thin slice of lemon, cucumber or apple to add some flavor.
The foods we eat also contribute to our daily water needs. Fresh fruit, raw vegetables and fresh fruit juices are encouraged while caffeinated drinks and sodas should be avoided. 




Caffeine makes you produce more urine. Losing water affects the blood and the cells will sickle more easily. Too much soda is not good for teeth and bone health. Finally, remember to drink a little more water when you participate in exercises due to loss through sweat.
Well just I pen off here are some fun facts about water!!!
·         The adult body is made up of about 60% water which is about 11% less than the water that covers the earth’s surface.
·         Babies and infants have more water than adults with around 75-78% at birth. This reduces to 65% by the time the babies turn one.
·         Women have less water than men.
·         People with more fatty tissue have less water than leaner people.
·         Different organs have various water percentages. Blood is 92% water, the brain and heart comprise of 75% water, the skin is 64% water, muscles and kidneys are 79% water and the bones are about 22% water.

      Adieu!! Love Life!!

Joyner

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

Sickle Cell Symptom #2 - Infections : Effects and Prevention

Continuing our discussion on infection, last week we found out why Sickle Cell Warriors are highly predisposed to infections.If you missed it, you can read it HERE.

Speaking from personal experience, infections are no fun. The body becomes very sluggish and crisis ensues. Afterwhich many Sickle Cell Warriors fall ill admitted in hospital, pumped full of antibiotics. When an infection enters the body, the sickle cell warrior is compromised. What I mean to say is, the body directs all its defenses and energies towards destroying the foreign pathogen making it vulnerable and weak.

Borrowing from Catherine Booth, Baba Inusa and Stephen K. Obaro who wrote an article about infection and Sickle Cell on the International Journal of Infectious Diseases, they tell us what an infection does to the body of a Sickle Cell Warrior.

They say that, during infection with any pathogen, changes occur at a cellular level, which predispose to crises. Levels of circulating leukocytes and inflammatory cytokines increase, with elevated expression of adhesion molecules on both the blood vessels and leukocytes themselves. This occurs locally in infected tissues and systemically. Local acidosis and hypercapnia (increased CO2) in areas of inflammation increases the Hb oxygen, promoting unloading of oxygen from Hb and thus increasing sickling.

The sickling process is initially reversible when HbS is reoxygenated, but dehydration of RBCs increases HbS concentration, promoting extensive polymerization (cell adherence) and causing irreversible membrane damage. These poorly deformable dense cells contribute particularly to vaso-occlusion (vessel obstruction), adhering readily to leukocytes (white blood cells) and endothelium, and also undergo hemolysis (Red blood cell destruction).

In addition, infections can have more non-specific effects on the host physiological milieu, which increase the risk of sickling. Fever with water loss due to sweating, anorexia, and nausea with reduced oral fluid intake, diarrhea, and vomiting all contribute to dehydration. Renal impairment in SCD causes poor urinary concentrating ability, so plasma osmolarity (osmotic concentration) can rise, promoting RBC dehydration. The stress and emotional response, accompanied by neural and hormonal changes, may also play a role.

Sickle Cell Anaemia Infection Prevention #10003


Common pathogens associated with infection in sickle cell anemia with underlying mechanisms for predisposition

Pathogen and Predisposing factors


Encapsulated bacteria (e.g., Streptococcus pneumoniae, Haemophilus influenzae, Neisseria meningitidis, Salmonella spp) - Impaired splenic function & Impaired opsonization (bacteria destruction)
·         Salmonellae               - Recurrent vaso-occlusion with intestinal infarct, necrosis and increased gut                                           permeability & Decreased neutrophil (white blood cell) killing
·         Malaria                - Decreased deoxyhemoglobin solubility
·         Parvovirus           - Increased red cell turnover
·         Hepatitis B, C      - Multiple blood transfusion
·         Chlamydophila    - Unknown
·         Yersinia enterocolitica - Iron overload
·         Mycoplasma        - Unknown
Edwardsiella tarda - Increased intestinal permeability and biliary sludging

Prevention
Simple general measures are important in reducing the risk of infection, though the aim is to ensure as normal a lifestyle as possible. Meticulous attention to hygiene, particularly hand-washing, is vital, and to protect against Salmonella, patients are advised to cook food thoroughly, particularly chicken and eggs, keep items refrigerated, and avoid contamination. Nutritional supplementation with zinc has been reported to reduce infection risk, improve growth rates in SCD children, and possibly improve skeletal and sexual maturation as well as having psychological benefits. Early identification of infections is another key area, enabling prompt initiation of treatment to reduce complications. Parents are encouraged to monitor their children closely at home and seek advice if they have a fever or respiratory symptoms, while maintaining good hydration. There should be a low threshold for the use of antibiotics in ill children with SCD, particularly in the presence of chest signs or symptoms, which may herald ACS(Acute Chest Syndrome).


I hope behind the biological jargon, you all learned something. I promise to make it easier to digest next time. If there is any question or comment with regards to infection and sickle cell, post it below on the comment section.

Otherwise, until next time. Stay healthy and,


Love Life!
Lea


·        

Top Nutrients That Boost Your Immune System




Top nutrients that boost your immune system

So you learned how a strong immune system is important in the management of sickle cell disease. Well when it comes to diet & nutrition,it takes much more than an apple a day to keep the doctor away. It turns out that eating some pretty surprising nutrients will help keep your immune system on guard.
Hold on; let’s go back to the beginning for a minute. On the whole, your immune system does a remarkable job of defending you against disease-causing microorganisms. But sometimes it fails very easily, especially when you have a condition such as sickle cell disease: A germ invades successfully and makes you sick. The idea of boosting your immunity is enticing, but the ability to do so has proved elusive for several reasons. The immune system is precisely that — a system, not a single entity. To function well, it requires balance and harmony. So is it possible to intervene in this process and make your immune system stronger? What if you improve your diet? Take certain vitamins or herbal preparations? Make other lifestyle changes in the hope of producing a near-perfect immune response?
Your first line of defense is to choose a healthy lifestyle. Following general good-health guidelines is the single best step you can take toward keeping your immune system strong and healthy. Every part of your body, including your immune system, functions better when protected from environmental assaults and bolstered by healthy-living strategies such as these:

·         Don’t smoke.
·         Eat a diet high in fruits, vegetables, and whole grains, and low in saturated fat.
·         Exercise regularly.
·         Maintain a healthy weight.
·         Control your blood pressure.
·         Avoid alcohol.
·         Get adequate sleep.
·         Take steps to avoid infection, such as washing your hands frequently and cooking meats thoroughly.
·         Get regular medical screening tests for people in your age group and risk category.
Like any fighting force, the immune system army marches on its stomach. Immune system warriors need good, regular nourishment –yeah, here’s where the diet part comes in. You can ensure that your body and immunity run smoothly by rounding out your plate with plenty of colorful servings of fruits and veggies, plus 8 to 10 glasses of water a day, at the very least.There is some evidence that various micronutrient deficiencies — for example, deficiencies of zinc, selenium, iron, copper, folic acid, and vitamins A, B6, C, and E — alter immune responses in animals.

So what can you do? If you suspect your diet is not providing you with all your micronutrient needs — maybe you don’t like vegetables or you choose white bread over whole grains — taking a daily multivitamin and mineral supplement brings health benefits of many types, beyond any possibly beneficial effects on the immune system. Taking mega-doses of a single vitamin does not. More is not necessarily better. Researchers are investigating the immune boosting potential of a number of different nutrients, such as:


    a)     Vitamin A
For vitamin A, go colorful. Foods that are high in colorful compounds called carotenoids — carrots, sweet potatoes, pumpkin, cantaloupe and squash — are all great options. The body turns these carotenoids into vitamin A, and they have an antioxidant effect to help strengthen the immune system against infection.Experts have long known that vitamin A plays a role in infection and maintaining mucosal surfaces. Vitamin A deficiency is associated with impaired immunity and increased risk of infectious disease.

    b)     Vitamin B2
There is some evidence that vitamin B2 enhances resistance to bacterial infections in mice, I wonder what that can do for us!

    c)      Vitamin B6
This important vitamin — part of nearly 200 biochemical reactions in your body — is critical in how your immune system functions. Foods high in vitamin B6 include bananas, lean chicken breast, cold-water fish such as tuna, baked potatoes and chickpeas. Several studies have suggested that a vitamin B6 deficiency can depress aspects of the immune response, such as lymphocytes’ ability to mature and spin off into various types of T and B cells.

    d)     Vitamin C
You probably know about vitamin C’s connection to the immune system, but did you know you can get it from much more than just citrus fruits? Leafy green vegetables such as spinach and kale (sukuma wiki), bell peppers (hoho), Brussel sprouts, strawberries and pawpaw are also excellent sources. In fact, vitamin C is in so many foods that most people may not need to take supplements unless a doctor advises it.As much as itdoes this, it normally works with other micronutrients in boosting immunity rather than providing benefits alone.
    e)     Vitamin D
It’s best to get most of your vitamins from food, but vitamin D may be the exception to that rule. For many years doctors have known that people afflicted with tuberculosis responded well to sunlight. An explanation may now be at hand. Researchers have found that vitamin D, which is produced by the skin when exposed to sunlight, signals an antimicrobial response to the bacterium responsible for tuberculosis, Mycobacterium tuberculosis. So there’s another disease crossed off the list!You can increase your intake through foods such as fatty fish (salmon, mackerel, tuna and sardines) and fortified foods such as milk, orange juice and cereals. Many people have a hard time absorbing vitamin D from food, so if you have a vitamin D deficiency, talk to your doctor about supplements.

    f)      Vitamin E
Like vitamin C, vitamin E can be a powerful antioxidant that helps your body fight off infection. Almonds, peanuts, hazelnuts and sunflower seeds are all high in vitamin E. So are spinach and broccoli if you prefer to increase your intake through meals rather than snacks.

    g)     Zinc
Zinc is a trace element essential for cells of the immune system, and zinc deficiency affects the ability of T cells and other immune cells to function as they should. You can find zinc in oysters, crab, lean meats and poultry, baked beans (skip the kind with added sugar), yogurt and chickpeas. Zinc appears to help slow down the immune response and control inflammation in your body; this is why it’s probably the most talked about nutrient in the management of sickle cell disease.Caution: While it’s important to have sufficient zinc in your diet (15–25 mg per day), too much zinc can inhibit the function of the immune system.

     h)     Folate/folic acid
Folate is the natural form, and folic acid is the synthetic form, often added to foods because of its health benefits. To get more folate, add more beans and peas to your plate on a regular basis, as well as leafy green vegetables. You can also get folic acid in fortified foods (check the labels) such as enriched breads, pastas, rice and other 100 percent whole-grain products.

     i)       Iron
Iron, which helps your body carry oxygen to cells, comes in different forms. Your body can more easily absorb “heme iron,” which is abundant in lean poultry such as chicken and turkey, plus seafood; and “non-heme iron” in plant sources such as beans, broccoli and kale.

     j)  Selenium
Selenium seems to have a powerful effect on the immune system, including the potential to slow the body’s over-active responses to certain aggressive forms of cancer. You can find it in garlic, broccoli, sardines, tuna, brazil nuts and barley, among other foods.

    k) Herbs and other supplements:
Walk into a store, and you will find bottles of pills and herbal preparations that claim to “support immunity” or otherwise boost the health of your immune system. Although some preparations have been found to alter some components of immune function, thus far there is no evidence that they actually bolster immunity to the point where you are better protected against infection and disease. Demonstrating whether an herb — or any substance, for that matter — can enhance immunity is, as yet, a highly complicated matter. Scientists don’t know, for example, whether an herb that seems to raise the levels of antibodies in the blood is actually doing anything beneficial for overall immunity. 
But that doesn’t mean we should discount the benefits of all herbal preparations. Everyone’s immune system is unique. Each person’s physiology responds to active substances differently. So if your grandma says she’s been using an herbal preparation for years that protects her from illness, who’s to say that it doesn’t? The problem arises when scientists try to study such a preparation among large numbers of people. The fact that it works for one person won’t show up in the research data if it’s not doing the same for a larger group. Some of the supplements that have drawn attention from researchers are these:
·          
     Garlic contains the active ingredient allicin, which fights infection and bacteria. British researchers gave 146 people either a placebo or a garlic extract for 12 weeks; the garlic takers were two-thirds less likely to catch a cold. Other studies suggest that garlic lovers who chow more than six cloves a week have a 30 percent lower rate of colorectal cancer and a 50 percent lower rate of stomach cancer. So eating two raw cloves a day (or night, to avoid giving others a sniff of your garlic breath) and adding crushed garlic to your cooking several times a week is a brilliant idea.
·        Probiotics (good bacteria), or the "live active cultures" found in yogurt, are healthy bacteria that keep the gut and intestinal tract free of disease-causing germs. So as you shop for your yogurt, make sure you pick a brand with a ‘Live and Active Cultures’ label because it contains some beneficial “bugs”… I know it’s not as gross as it sounds.
·         Ginseng.
·         Aloe vera.
·         Astragalus membranes from the astragalus plant.
·         Echinacea.
·         Glycyrrhiza glabra (licorice root).

And that my friends, brings me to a conclusion in today’s article. I know, I know, you’re probably wondering how and where to get these nutrients and herbs from, how can they possibly improve my health and most importantly, how can they manage sickle cell disease. No worries, let’s hold onto this piece of info and take it all in. We will begin a series of articles focusing on each nutrient and supplement in the weeks to come. Until then, eat healthy and stay active!
Love life!
Sharlene