Sickle Cell Disease: Self-care…Zambia style

By far, the most significant project that I worked on in Zambia was a group for kids with Sickle Cell Disease and their parents. We discussed SCD, realistic self-care, asked and answered questions, and shared stories. I got involved with Sickle Cell Disease when a Zambian friend informed me that his 21-year-old son with SCD had recently died and that his 14-year-old daughter also has SCD. My friend and his wife and children live in a small, rural town that has electricity, running water, schools, a clinic, and a small government hospital. Not many people in rural Zambia are fortunate enough to have such luxuries, but even with these luxuries the only care that his children with SCD received was acute care during a pain crisis. Most often this care was limited to: admission to the hospital for IV fluids, NSAIDS (typically diclofenac) for pain (sometimes pethidine, if available and with persistent parents), and coartem or quinine for treatment of possible malaria.

My goal for this project was to provide the people attending the meetings with knowledge of Sickle Cell Disease and some preventive care techniques relevant to the resources available to them – without relying heavily on adequate healthcare and availability of medications. Before I started this health education and support group, I reviewed the information that I was going to present, as well as my plans for the group, with the local doctors. They respectfully listened to my idealism, but really only nodded and smiled and sent me on my way. One doctor even told me that no one would come to the group meetings if I didn’t have anything to give (hand out) to people – that people would only come if there was something in it for them; that knowledge alone wasn’t enough incentive for anyone to want to be there. I was undeterred and had news of the meeting broadcast on the local radio a couple of days before the date, stressing that this meeting was simply informational. Twenty-four people with diagnosed SCD and/or their parent(s) attended the first meeting to learn about SCD and to ask questions – I did carry a box of biscuits to the meeting though.

The following information is what became the foundation and most disseminated information in any of the meetings. In areas below where foods are discussed, the original presentation only included locally available foods; I have expanded those areas to include the complete lists that I found. All of this information is based on my research and nursing knowledge base, but I am not a doctor. *Please consult your healthcare provider before beginning or changing your healthcare practices and routines.*

  1. Hydration:

The single best thing you can do to take care of yourself is to maintain adequate hydration. If you are adequately hydrated your urine will be light yellow. If it’s darker you should be drinking more water (some vitamins, medications, and foods can also affect the color of urine, check with your doctor if you have concerns). Adequate hydration can also help to ease tension, ease anxiety, and improve concentration, as well as help fight headaches, daytime tiredness, and muscle cramps.

Ideally you should drink about 2.5 litres of water every day! Some of that can come from the foods you eat, but you should still drink at least 1 litre of water every day!

Some foods that have high water content are:

·       Cantaloupe

·       Watermelon

·       Grapefruit

·       Strawberries

 

·       Cauliflower

·       Baby Carrots

·       Green Peppers

·       Radishes

·       Broccoli

·       Tomatoes

·       Cucumbers

·       Iceberg Lettuce

·       Pineapple

·       Starfruit

·       Celery

·       Spinach

(Source: blackdoctor.org)

Eating more of these foods will help get you to 2.5 litres of water everyday!

  1. Avoid being cold: try to always be comfortably warm – not hot and sweaty
  • Stay out of the rain
  • Wear socks and/or a hat and/or gloves
  • Use a hot water bottle
  1. Prevent Infections:
  • Boil or filter your drinking water
  • Drink at least one litre of water every day
  • Frequent hand washing
  • Eat a healthy diet with a variety of meats, vegetables and fruits
  • Use a mosquito net
  1. Vitamins and Healthy Diet:
  • Folate (Folic Acid): is a vitamin necessary for the production of normal, healthy red blood cells (RBC). It can be found in okra, beans, peas, lentils, avocados, brussels sprouts, seeds and nuts (sunflower seeds, peanuts, flax seeds, almonds), mushrooms, cauliflower, celery, corn, beets, liver, bananas, citrus fruits (papaya, oranges, grapefruit, strawberries, raspberries, lemons), melons, carrots, squash, green, leafy vegetables (spinach, collard greens, turnip greens, mustard greens, romaine lettuce), asparagus, broccoli, (Source: www.globalhealingcenter.com)
  • Thiocyanate: has been shown effective in preventing sickling. It can be found in millet, buckwheat, lima beans, greens, cabbage, carrots, cashew nuts, cauliflower, strawberries, lentils, broccoli, chickpeas, plaintain, sorghum, African yams, cassava. (Source: healingblends.wordpress.com)
  • L-Arginine: helps dilate blood vessels to improve blood flow. It can be found in red meat, poultry, fish, dairy products, eggs, soy proteins, groundnuts. (Source: www.webmd.com)
  • Natural Polyphenols: antioxidant properties and inhibit LSD1. Natural polyphenols are in spices, dried herbs, cocoa, green tea, black tea, red wine, dark berries, seeds, nuts, olives, vegetables, fruit other than berries, extra-virgin olive oil, rapeseed (canola) oil. (Source: foodwatch.com.au)
  1. Sick Care:

Hydration: Often when we are not feeling well we don’t feel like eating or drinking. We’ve already mentioned how important hydration is to people with SCD and when you are sick fever, diarrhea, and vomiting all work to dehydrate you – making adequate hydration even more important! If all you can manage is a sip, then sip – frequently.

Diet: It is also very important to keep eating when you’re not feeling well. A frequently used diet that can help ease vomiting and diarrhea is the Bananas, Rice, Applesauce, Toast (BRAT) diet. These foods are binding and easy on the stomach, but are not very nutrient-dense. Add more nutritious foods to your diet as you start feeling better.

Rest: Rest helps your body recover, but don’t forget get to add some movement and sunshine into your recovery as well.

  1. Other options for managing pain:
  • Deep breathing and relaxation
  • Hot water bottle
  • Yoga
  • Massage
  1. Emergency situations – go to the hospital immediately:
  • Difficulty breathing
  • Fainting
  • Fast breathing and heart rate and left side abdominal pain
  • Sudden weakness, confusion, numbness on one side of body
  • Pain, redness or swelling of leg
  • Severe headache
  • Difficulty seeing, walking, speaking

 

Much of what is noted above is good information for everyone. These are things we should all be doing to take care of ourselves. The simplicity of the things we can do should not be underestimated. There is little risk in being adequately hydrated, eating a healthy diet, and listening to our bodies, but as with everything, moderation is the key. Mushali chiwahi (Remain well).

 

Here is a short video about managing SCD from someone who has Sickle Cell Anemia. Her tips are:

  1. Sleep! Rest as often and as much as you can
  2. Take a multivitamin every day
  3. Listen to your body. If you feel like you are getting sick: 1) increase your water intake, 2) take mild pain medication for two days, 3)
  4. Get out of the house. When you are not feeling well movement and sunshine help you to feel better.
  5. Forget Sickle Cell. Think of yourself as a normal person. Don’t go crazy, know your limits. Moderation.

(Source: www.youtube.com)

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