Every person living with Multiple Sclerosis (MS) has a different story and different struggles, for Michelle, it has been finding a treatment plan that can effectively deal with her symptoms.
South Africa (15 May 2023) – South Africans living with Multiple Sclerosis are sharing their stories in the hope of raising awareness about the disease and giving people who have been diagnosed, a touch of hope. Last week we met Christelle, this week we meet Michelle.
The month of May is Multiple Sclerosis (MS) Awareness Month. The disease is still underrepresented in South Africa but that is about to change! Multiple Sclerosis South Africa is raising the profile of the disease, offering support for families and raising funds to help make a difference. Their goal is to unite Africa and create a federation for the continent that will empower thousands of sufferers.
Speaking to the team at MS South Africa, we got to learn more about the disease and how it is being managed in South Africa, which you can read here. They have shared some in-depth information about MS but if you have any questions, you can reach out directly here.
Today, we meet a South African living with the disease, Michelle Dangirwa, who was diagnosed at the age of 23. She has spent the last decade trying to find the right treatment plan for her and while it has been a struggle, she refuses to give up.
Michelle Dangirwa’s Story
“It feels like a lifetime ago” when I first heard the words “it’s MS”. Ten years ago, those words didn’t mean anything to me. At the time, I was 23 years old and had my whole life ahead of me. I was trying to get through my final year of university when I became sick. I initially thought it was food poisoning, but it turned out to be something called MS.
One Sunday, while attending church, I suddenly felt nauseous and had to go to the bathroom. I started vomiting and couldn’t stop, even when I tried to drink water. I was taken to the hospital where a neurologist treated my symptoms and put me under observation. The next day, I underwent a lumbar puncture and an MRI, which confirmed that I had Multiple Sclerosis.
At the time, I didn’t fully comprehend what the diagnosis meant, but my mother was deeply concerned. I sought a second opinion in January 2012, and the specialist confirmed the diagnosis. I initially refused medication as accepting treatment would have been accepting the diagnosis.
Eventually, my health deteriorated, and I began experiencing weakness in my legs. In 2015, I started treatment with Rebif, but it didn’t work for me. I suffered from chronic depression and insomnia and had to take antidepressants and sleeping medication. The Monster MS seemed to attack me one after the other.
My work suffered, and my career plans were derailed due to the deterioration of my health. On my best days, I could function, but it meant taking prednisone regularly, which I knew was harmful. On my worst days, my mind was muddled, and I had difficulty with memory. I experienced the “M hug,” which feels like someone is squeezing the life out of you.
Despite it all, I tried to fake a smile and get through the day, but my work was affected, and I had to take more sick days. In 2019, my company medically boarded me, and I fell into depression.
In 2020, the pandemic hit, and I felt numb. My mother took charge, and we changed doctors. I started using Aubagio, which didn’t work for me, and my mobility got worse. I developed constant foot drop in my right leg and had to use a cane more often. I then switched to Tuvigin, which was meant to be more aggressive, but it didn’t work either. After using it for a year, I developed more lesions and progressed to Secondary Progress MS.
I had to change my treatment again and started using Bonspri injections once a month. I have been using it for three months, and it seems to be working. I feel like I have a little more mobility and can stand. It may not seem like a lot, but for me, it’s a big deal. With MS, you must learn to celebrate small victories.
Unfortunately, I recently experienced a relapse and had to go to the hospital for five days of Solumedrol IV treatment. Despite this setback, I am not giving up on my new treatment. Treatment is about reducing the number of flares and relapses, not curing the disease, as there is currently no cure for MS.
Giving up is not an option for me. I will continue with Solumedrol IV, followed by Bonspri injections once a month for the rest of the year. If Bonspri doesn’t work, stem cell treatment may be an option in the future.
She encourages people to help support MS South Africa. This can be done via their GivenGain fund here. or through raising awareness about the disease. Putting a face to it, helps people see who is affected and how.
For Michelle, the journey to finding her perfect treatment plan is a priority. She has been looking for the right course of medication for several years. Her story shows that sometimes it takes time but as she shares, celebrating the small victories is what helps push through it all.