The year is 2009. You have been ill before . But this time, it is not the usual illnesses. You get a series of severe chest and throat infections. Then you get a kidney infection. At this point, the doctors get concerned. You are subjected to a series of tests to find out if there is an underlying cause for the infections. One of the tests done is the standard lupus test. You are informed there are indications of lupus in your blood. “Wait. Whaaaat? Nooooo. It can’t be!” These are some of the thoughts that run through your mind. That night you don’t sleep much. There is no way you can have lupus. You are in your mid – twenties. You are in denial! The symptoms recede. You go back to work full time and life continues as usual.
In 2012, you develop hyperprolactinemia and hypercortisol which are an indication of a compromised adrenal system. You have lupus alright. This means your immune system attacks your organs and tissues. You battle to stabilize your cortisol and prolactin levels. You struggle with severe migraines, chronic fatigue and extreme nerve pain. Your life changes. You no longer finish a novel within a day. You start the first chapter of a good book and suddenly fall asleep. You plan for a coffee date with your girlfriends then you can’t wake up to it.
The thing is, when you have lupus, you are either in remission or in flare. The doctors confuse you more. Sometimes you are normal, sometimes you are not. One time a doctor prescribes a very high dose of corticosteroids alongside other meds. You then learn you are predisposed to Cushing’s/ Addisons disease. So that high dose of steroids for a little longer than necessary triggers secondary Cushing’s. And yes, the lupus is still there!
Lupus is different for everyone. For you, your endocrine system is the most affected. Unfortunately, the endocrine system supports everything else – sleep, wakefulness, breathing, energy storage, the health of the heart…… Because of your struggling endocrine system, you gain a lot of weight in a short time. Dealing with the sudden weight gain becomes a daily priority. It is not easy. When you have Cushing’s, the endocrine mechanism seems to encourage the storage of fat in the upper trunk of your body. But again, that is less of a worry considering you have to constantly worry about a misfiring heart and extreme nerve pain. You long for a normal life. You look back and wish you could rewind the clock to 2008 when everything was normal. You have cried. And cried. And the tears have dried. Your whole life has changed.
Mama’s life has changed too. She can’t afford to lead a normal life with the unpredictability of lupus. You get tired way too quickly. You wake up normal. Then suddenly in the course of the day, some symptoms just show up – hyperventilation, overheating, sudden extreme fatigue. You have become used to these surprises in your life. Your family has gotten used to you sitting down unexpectedly and falling into deep light coma like sleep.
Your body’s adrenal corticoid system doesn’t know whether to throw a decent shot of sustaining cortisol or a huge shot of adrenaline. As a result, you take an extended leave from work. You meet a friend in your gym class whose kind of lupus manifests in faulty blood clotting cycles. He has discoid lupus which affects his facial skin. Now that is how lupus is designed. Whichever part of your body your immune system turns against, that’s it.
It has been 7 years living with lupus. Treatment of lupus is expensive. Very expensive. You have exhausted both your savings and your family’s savings. You have been cooped up inside for too long and you have started feeling worthless. Because lupus has affected your endocrine system, you fear that you might develop the kind of chemical setups that result in chronic depression, bipolar or even schizophrenia. You finally admit you need help.
Lupus is an autoimmune disease that causes inflammation in different parts of the body. The immune system which usually fights off viruses and bacteria, loses the ability to tell the difference between these “foreign invaders” and your own cells and tissues. For some reason, the exact cause of lupus still remains unknown. However, scientists believe that there is a generic predisposition to the disease and that environmental factors trigger the symptoms. According to Wemo Kitawa who co runs the Lupus Foundation of Kenya, treatment and management of lupus is very difficult. “There is no cure for lupus so patients are advised on how to manage the condition. There is no particular drug regimen like the way malaria has malaria drugs. Treatment is based on the symptoms and needs of each lupus patient because of the various degrees and types of lupus. Lupus is like fingerprints – unique to each patient.”
When not in flare, you need to see your doctor – rheumatologist once in four months. When you are in flare, you need to see a doctor once in two weeks, sometimes more often if new symptoms come up. The doctor will not review your prescriptions until they see your new blood levels – so you have to get blood tests every time you see your doc. These tests are expensive! Wemo says ” Lupus is a high risk condition so most insurances shy away from covering lupus patients. This then means lupus patients have to finance the expenses from their pockets.”
Lupus Foundation of Kenya was founded in 2009 by the late Sharon Argwings – Kodhek. It started as a support group for lupus patients but has since grown exponentially. Wemo says that they are working on setting up resource centers across the country. This will help them in documenting statistics as well. She estimates the current number of lupus patients in Kenya at 200,000. And Juliet Maruru is one of them.
There is only much that friends can do for you when you are in need. And Juliet’s friends are coming through for her…… and inviting you to join them.
On Saturday 23rd April 2016, at the Pawa254 gardens, #SheBlossoms fun day will be happening from 11:00 am to 6:00 pm. There will be lots of music, storytelling, books, games, cycling for lupus, food and so much more. Proceeds from this event will go towards Juliet Maruru’s medical fund. There will also be plenty of lupus information on the venue.
Please spread the word!