The natural order of life is that a parent takes care of her child, but AnneLillian Njeri's daughter has been her caregiver ever since she was nine years old.
The 40-year-old mother has lupus, an inflammatory disease caused when the immune system attacks its tissues. It is a condition that can only be managed, not cured.
“Some of my friends left me because they did not want the responsibility of a sick person, and some did not care enough to know the details. It’s a difficult disease to explain, even to adults. I still have a few old friends that stuck by me. My family has been my biggest support system.”
Ashley, her daughter and caregiver, who just turned 18 and is a high school senior.
“Sometimes, my daughter dresses and bathes me. I have to do monthly infusions. These are draining, and the side effects are brutal. My skin has changed and continues to change. I used to have low self-esteem and depression due to the changes in my body,” says AnneLillian.
An infusion is a method of putting fluids, including drugs, into the bloodstream. It is also called an intravenous infusion.
Story of courage
Ashley adds that taking care of her mother has been a full-time job. She says she has to compromise a lot, from hanging out with her peers to juggling her schoolwork as she sees firsthand her mother's battle with health issues.
“I have always been there, and I do not get tired of giving her a helping hand whenever I can. It has taken my mother a lot of courage to let me clothe and bathe her, feed her and pack her medication. We have bonded more, and I just want her to get better,” she says.
She says that she has learnt to love herself through her mother.
“Seeing my mother struggling every day and not giving up makes me stronger. I do not know how she does it, but she is a fighter. I have learnt to grow up quickly and become responsible.”
As Ashley gets into adulthood, her mother says she wants her to find herself without stressing herself over her health.
“I never cease to remind her that I will always remain her mother no matter what. I still push myself to work hard so I can provide for her. We are best friends. Being able to communicate with her what I am going through openly has eased my journey,” says AnneLillian.
AnneLillian has broken teeth, scars all over her body, and a shrunken mouth. Her self-esteem took a hit because of these changes.
She remembers dealing with kidney issues growing up, but she was never diagnosed with any life-threatening condition and was not on any life-long treatment.
She gave birth to her daughter in 2002, and in 2003, they relocated to the USA through the Diversity Visa Program.
While in the US, AnneLillian worked in a home as she went to nursing school and graduated in 2007.
Genesis of disease
In July 2012, at 32, AnneLillian started experiencing migraines, joint pains and hair loss. Her fingers turned blue. Doctors had a hard time figuring out what was wrong with her.
“When the joint pain was too much, I would go to the hospital, and they would give me pain medication. I used to run every day, and I thought the joint pain was due to joint misuse from running and cross fit.”
In the same month, she collapsed at work and had to be rushed to hospital in an ambulance.
“They thought I had a major heart attack, but it was not so. A cardiologist, endocrinologist, infectious disease doctor, pulmonologist, and others ran tests on me because my organs were shutting down. I was tested for cancer, HIV, diabetes, to mention a few, and they were all negative. On the fourth day, they called a rheumatologist who diagnosed me with lupus.”
Crippling side effects
One of the treatments used in the management of lupus is oral steroids. The side effects can be crippling, ranging from weak bones, rapid weight gain and higher chances of getting cardiovascular diseases and stroke.
AnneLillian has been a case management nurse since 2015. She relocated from Indiana to Texas in 2017 due to the cold weather.
Her doctor warned her that she might lose her limbs due to cold weather in Indiana.
“Before I got sick, I ran, worked out, and more importantly, raised my daughter. It is not easy here in the US to go to school and raise a child as a single mother, but I did it to show my daughter that everything is possible with the willpower to fight.”
AnneLillian battles with symptoms like joint pain, nausea, chronic fatigue, chronic pain, brain fog, shortness of breath, change in skin colour, hair loss, mouth dryness and ulcers, anaemia, headaches, joint stiffness and swelling.
Lupus has attacked her lungs, liver, gastrointestinal, central nervous system, joints, and skin.
It has caused her other diseases like growing pressure in her skull, causing bad migraines, threatening stroke, and loss of vision.
AnneLillian suffers vessel constrictions which makes some areas of her body feel numb, causing her limbs to turn blue from lack of oxygen.
She says that she is scared; she lives in fear of her prognosis being shorter.
“Sometimes, I think I will die, and it scares me. The thought of leaving my daughter tortures me. I am in pain most of the time, I survive on medication, my daughter needs her mother, but I have learnt to love myself and keep fighting.”
Source of motivation
She draws her hope and motivation from her family, who have been very supportive, especially financially lifting her heavy burden of procuring medications.
“My family has been a source of financial, emotional and physical health. They visit often. It is hard as an adult to rely on my extended family to survive. They have paid my medical bills, and at some point, they requested I go back to Kenya so that they can take care of me.”
“Medication is costly, especially when you are treating all these different conditions. I take oral medication, injections, patches, and undergo monthly infusions, which cost Sh11 million a month. I am lucky to be covered by health insurance that pays 80 per cent of the treatment, but I must pay 20 per cent from my pocket at the beginning of every year.”
That does not include CT scans every six months, an echocardiogram every six months, or other oral medication that can go up to Sh300,000 per month.
“I had three lumbar punctures this year and three MRIs of the brain. My family and friends are my support when insurance fails.”
For AnneLillian, even a tiny milestone gives her hope. Every night, she has to take 22 pills to manage her condition, adding that the pain of getting lupus treatment is universal.
“I get migraines for two days after doing the 16-hour intravenous treatment.”
With support from the company she works for, she takes frequent sick-offs to go for doctors’ appointments and infusions. “Sometimes, I pass out at work and have to be rushed to the hospital. In the USA, we have FMLA (Family Medical Leave of Absence), which protects the employee if they must get treatment.”
AnneLillian has been stigmatised for her “invisible” disease.
“I have a handicapped number plate for my car. People throw insults at me, thinking that I am just parking at the disabled spot without reason. I remember one time I had come from the hospital and had to pick up the medications and park there. A woman insulted me, telling me to stop pretending.”
She says that in the US, treatment is safe and accessible.
“In Kenya, from the data we have collected, it is very hard. We only have a few specialists in the country, and their consultation fees are high. Most lupus warriors are left to choose between medication and food. NHIF does not cover most of the medication for lupus.”
She started a support group in 2018 called Scleroderma Lupus and other Autoimmune Diseases (SCLAD) Awareness.
“I am very vocal on Facebook. I started talking about my journey, and I wanted to create awareness and to have a platform where we can support Lupus patients through this journey.”
After she went public with her story, many people started reaching out to her private inbox, asking several questions. She started a WhatsApp group.
“There was a huge need for awareness and support for warriors in need, especially in Kenya. SCLAD awareness was registered as an NGO in Texas, the USA in 2020, after the high demand of support needed from warriors."
SCLAD awareness mainly supports warriors in Kenya. In this group, all warriors get support from all angles. Doctors, nutrition specialists, nurses, counsellors, psychiatrists, and many people with different autoimmune diseases, not just lupus.
“In this group, warriors get financial as well as emotional support. SCLAD awareness pays for prescribed medication, treatment, consultations, transport and hospital, through donations and merchandise sales.”
When Covid-19 hit, the demand for assistance was high due to loss of jobs, countries lockdown, domestic violence and many more. SCLAD had to seek help from well-wishers to raise finances by buying merchandise like T-shirts, sweatshirts and bracelets.