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A Kenyan Lupus Warrior’s Story

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Pendo: Hello Imani, how are you? Are we still meeting tomorrow?
Imani: I am not really sure Pendo. Still not feeling Ok. I have not felt 100% since we last met last quarter for the “chama” meeting. I have actually not been working at my optimal either

Pendo: Sorry to hear that Imani. You have always been energetic and always on the move. Still not sure I understand what you are suffering from. Have you seen a doctor? How are you feeling exactly?
Imani: Not sure how to explain, I have had acute eczema and have been referred to a dermatologist. The strangest thing though is that I have a number of other symptoms. I am extremely fatigued even after a 10 hours’ sleep, body aches all over, even in places that I didn’t know could pain, I have mouth sores, also developed wounds on the palm of my hands and my hair has also started falling off )-:,

Pendo: Oh no, that’s a lot. Pole sana.
Imani: I sometimes even forget some symptoms when I get to see the doctor. My face looks burnt, it developed a rash. In fact, a stranger the other day asked why I decided to bleach my face with cheap skin lighteners (insert eye roll)

Pendo: Well that is really insensitive of them! I will definitely come and see you this Sunday

Well ladies and gents that is an example of a conversation that has happened, is happening, and will continue happening among Lupus patients/warriors who are yet to get a proper diagnosis.

You must wonder what Lupus is:
Systemic Lupus Erythematosus, in short Lupus is an auto-immune chronic condition where the immunity is over-active and attacks healthy organs and tissues leading to inflammation. Simply put, the immune system which comprises of white blood cells is expected to solely fight off pathogens. However, in the case of lupus, it fails to recognize, and instead destroys good and healthy cells. Lupus can attack any organ and tissues such as the skin, heart, lungs, brain, joints, and kidneys. While lupus is not fatal, kidney disease in people living with Lupus can be fatal and it may occur in up to 50% of those with lupus.

A few facts about Lupus in Kenya:
9/10 patients diagnosed with Lupus are women of child bearing age (14 to 45 years of age). A study found that 46.5% Lupus patients reported being misdiagnosed, it also shows that it takes nearly 6 years from the time people with Lupus first notice symptoms to a correct diagnosis. Diagnosis of Lupus is expensive and costs up to KShs. 150,000. Further to that, lupus warriors
required medication that can range from KShs. 5,000 up to KShs. 100,000+ per month depending on the medication required. The new country economic update shows that the proportion of Kenyans living on less than the international poverty line (US$1.90 per day in 2011 PPP) is 35.6%. This shows the huge social economic burden.

We have more than 200,000 known lupus warriors in Kenya.
Lupus Foundation of Africa is a registered society leading in the fight against Lupus through raising awareness, lobbying for government support in Kenya. Some of the foundations achievements include registration of the foundation, creating awareness and reaching more warriors, arranging for periodic consultation with Rheumatologists especially during these Covid
19 Pandemic period, negotiating for discounts on Lupus medication and, organizing awareness events such as The Lupus Day Awareness event on 10th May 2019 at Aga Khan Hospital.

There is no known cause of Lupus, however, there may be genetic inclinations and lupus may be triggered by stress, infections, certain drugs or even UV rays from sunlight or florescent light. Imagine that a fluorescent bulb or basking in the sun or undergoing a stressful period or even change of weather can be a trigger to a Lupus warrior. Consuming your tasty chapati (gluten) with white sugary tea can also cause a trigger.

How can you find out if you or a loved one has Lupus?
These are some of the most common signs and symptoms of Lupus: fatigue, low grade fever, painful joints and muscles, shortness of breath, mouth sores, skin rashes and in particular a rash shaped like a butterfly across the cheeks and/or the upper chest, water retention fingers & toes that turn white or blue in the cold or during stressful moments, brain fog, headaches, confusion, emotional instability and memory loss. Imagine being in the middle of a conversation and completely forgetting what you wanted to say or planning a productive day but waking up fatigued beyond belief after nine hours of sleep and being in pain with tests coming back negative on different diseases, viruses or bacteria.

No two cases of Lupus are the same but the sure thing is that it is a painful, emotionally, financially, socially and physiologically draining chronic condition with no cure yet. While there is no cure, Lupus can be managed through the right balance of medications that include an immune-suppressant and steroid to reduce inflammation among others. It is always
advisable to listen to your doctor and adhere to dosage and medications prescribed.

Healthy Foods

Lupus can also be managed by reducing inflammation through foods such as vegetables, fruits, and whole foods packed with micro nutrients. Examples of these foods are turmeric, sweet potatoes, pumpkins, ginger, coconuts, pineapples, probiotic foods and drinks etc. Food is indeed medicine. Another way of reducing inflammation is cutting out foods that
increase inflammation such as wheat, sugar, dairy, processed food and foods grown with pesticides and fertilizer.

As always, the most important thing is to equip yourself with information and listen to your body.

Information is power!
Resting when tired, getting at least 8 hours of sleep surrounding yourself with the right support system and being kind and compassionate with yourself is crucial in fighting and managing Lupus. Others ways also include eat healthy meals, taking medicine as prescribed, staying away
from direct sunlight, using sunscreen always, and staying away from toxins including skin, hair & household products. Different oils are excellent in reducing the appearance, and even completely eliminating scars. Most importantly, learn how to manage stress be it by praying, meditation, yoga or other methods.
With care & proper management and with the guidance of doctors, lupus warriors can, and do, live a full life.

Oils

May is Lupus Awareness Month
You can support Lupus Warriors by learning and raising awareness. Awareness will drive down stigma and encourage comfort, care and kindness for lupus warriors at home, in offices and social gatherings. Where possible assist financially especially the less fortunate who struggle with daily medication and diet needs required for lupus management More long term solutions required are subsidized drugs, medical tests & sunscreen for lupus and other warriors fighting autoimmune conditions in Kenya. One can also reach out to Lupus Foundation of Africa to offer assistance.

There is still no cure for Systemic Lupus Erythematosus. We need a cure.

Written by Evelyn Njogu
A foodie, travel enthusiast, book lover, a daughter, a sister, a friend, an interior designer, a Sales & Marketing profession working for a very supportive organization and a lupus Warrior, among others

References
Lupus Foundation of America. (2017). Study reveals shockingly high rates of incorrect Lupus diagnosis. Retrieved from
https://www.lupus.org/news/Study-reveals-shockingly-hIgh-rates-of-incorrect-lupus-diagnosis
The World Bank. (2018). Poverty incidence in Kenya declined significantly, but unlikely to be eradicated by 2030. Retrieved from
https://www.worldbank.org/en/country/kenya/publication/kenya-economic-update-poverty-incidence-in-kenya-declined-significantly-but-unlikely-to-be-eradicated-by-2030

The Lupus Foundation of Kenya

8 thoughts on “A Kenyan Lupus Warrior’s Story”

  1. Wow! This is lovely.
    Love her warrior spirit
    You forgot to say she is a favourite aunty to some lovely munchkins😊

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