MY STORY: I stood up against incurable disorder

"My name is Terry Kimani. I am 25 years old. On a particular day in August 2015, I woke up with a drooped left eyelid. I assumed that I had been bitten by a mosquito while sleeping.

As such, I didn’t give it much concern, trusting that it would get back to normal within a couple of days.

“However, after three days, my other eye became droopy as well. It became increasingly difficult to see due to the extent of the slump.

“At this point, I scheduled an appointment with an ophthalmologist hoping to find the cause and solution to what had befallen me. Upon running some tests on me, the doctor concluded that my eyes were okay and the situation could have been a symptom of another condition. She ran some blood tests and after two weeks of waiting for the results, I was informed that I had a rare condition, Myasthenia Gravis (MG).

“I had never heard of that condition so it really got me worried to hear the doctor say it. She explained that Myasthenia Gravis is a term used to define weakness in skeletal muscles caused by a breakdown in communication between nerves and muscles. In some quarters, it is referred to as the ‘snowflake disease’ because it differs so much from one person to another.

“She recommended me to a neurologist, who I still see periodically. He suggested that I undergo Thymectomy surgery (a surgical procedure aimed at removing the thymus gland) in a bid to stop the production of the antibodies that were weakening my muscles.

“The surgery was successful and I was off medication for two months. I had happy days and at the back of my mind, I thought the fight was over until I got a relapse.

I was put on a heavy dose of steroids and immune suppressants.

“When I started seeing the doctor, he informed me that MG has no cure but it can be managed and controlled as it is a chronic disease.

He also mentioned that the condition affects people differently and is associated with symptoms such as droopy eyelids, slurred speech, double vision, hoarse voice, difficulties when chewing, difficulty in breathing and unsteady movements when walking.

“He warned that although the medication is meant to control some of these problems, it can lead to a host of other conditions if taken for a long time.

Yet, it’s a journey that people with Myasthenia Gravis have to endure.

OCULAR MUSCLES

“During the first year after diagnosis, my ocular muscles were the most affected.

I had droopy eyes and double vision most of the time.

After taking a lot of pills, the double vision would disappear albeit temporarily. However, sometime last year, I woke up one morning with my body extremely fatigued-my body muscles had completely shut down.

Looking back, this was the darkest part of my journey because I had to take 12 pills every day despite not seeing any improvements.

“My life took a shift — all that I considered being easy tasks suddenly turned into insurmountable challenges.

I couldn’t walk on my own, had chewing and breathing difficulties and I even required help to take a shower or dress up.

When you are used to being normal and this happens, it is very easy for people to brush off your concerns and dismiss you as lazy, or unwilling to co-operate yet your muscles cannot handle basic chores, work or school-related activities.

“Thankfully, my family, especially my husband, have been very supportive. They ensure that I have someone at home to help me and that I take nutritious meals on a daily basis, which is very necessary with the kind of medications I take.

“I continued taking the pills with hope for improvement but my condition was getting worse.

My neurologist suggested that we try an alternative treatment known as rituximab infusion, which basically refers to the introduction of new antibodies to block the cells responsible for weakening the body.

However, the infusion is quite expensive- costing more than Sh500,000 for tests and administering the dose.

“For instance, my monthly medical costs stand at Sh10,000, exclusive of consultation fees and other tests.

Missing a single dose can lead to a severe relapse hence the need to take the medication consistently without failure or delay.

Luckily, my insurance cover comes in handy to meet such costs, but my heart bleeds for those who cannot afford the treatments or lack a good support system.

“Towards the end of last year, these unsettling concerns compelled me to create awareness about the condition on my Instagram page- Terry Kimani, and reach out to other people with similar condition and other autoimmune diseases.

Since I started, I have connected with 18 individuals and we are working together to register a Myasthenia Gravis Society in Kenya. We aim to have the disease recognised in Kenya as a threat to human health in a bid to have the treatment and management costs for victims subsidised.

I have learnt that most of them struggle with bills.

“My hope is to provide a safe haven for all victims of auto-immune disorders and to enlighten their families and friends on how best they can support those who have tested positive for the condition.”