Updated: Sep 22, 2022
It is one of those days you never forget…
Sunday 14th June 2005. I had flown back from JHB for work, and it was a chilly day. My husband back then when I arrived home had the flu, so I took the dogs for a walk on the beachfront in Sea Point Promenade and I remember stumbling over with my right leg. I kept on walking and thought it was strange that I kept of stumbling with my right leg. I came home and took a bath and realised that my right leg could not feel the hot water. It was a weird feeling and I immediately thought, well I might have shingles. So, I calmly got out of the bath told my husband I have this weird numbness down the entire side of my right leg so booked to see my GP on Monday. It was at 4pm and by then I had stumbled across google (as one does) and he evaluated me.
He immediately said it could be Guillain-Bare or Multiple Sclerosis and booked me into hospital with my first neurologist on 16th June 2005
Yup, after multiple tests, they discovered it could be MS but back then you had to show multiple flare ups to be properly diagnosed with MS. So, then November, a couple of months later I had another flare up, back to hospital and it was confirmed I had MS. I was in a high-flying corporate job at the time, and I can clearly remember the face on my neurologist to tell me the news. I told him “Don’t worry, I got this!”
I then had to decide which meds to go on and I chose REBIF – a beta interferon that I would inject myself 3 times a week. I started Jan 2006. I do remember back in November when I had the flare up and got back from the hospital, I went to Woolies to buy some groceries. I was in the line with a basket of goodies, and I just could not keep it together. I put my basket down, and just cried. This poor elder gentleman asked me if I was ok, and I said yes. I just needed to get home. I drove home feeling so overwhelmed that I couldn’t even do a simple grocery task. That is when my neurologist prescribed my first anti-depressant.
I was determined not to let MS drag me down. My mind was solely focused on my work. For two years I held a high corporate position and took my injections 3 days a week. It was hell. I had flu-like symptoms every day, sore joints, and fatigue BUT I made a decision each morning to get up, moved from horizontal to vertical and get on with my day with a smile on my face. In those two years I landed up doing the best sales I had ever done for Microsoft. We then decided it was time to start a family so I had to come off my meds so I could fall pregnant. All this time, I still worked my corporate job and used the power of my mind to keep me going. I did fall pregnant and to be honest, I was so freakin delighted to be off the meds. The beta interferon did not agree with me, and I still had some flare ups while on the drug.
This is where it gets interesting. I unfortunately suffered 7 miscarriages over a 2-to-3-year period and with each miscarriage came another MS attack. So, in the end we decided to go surrogacy. By this time, I was off meds, changed neurologists and decided to change medication. My new neurologist realised that the beta interferon would not work and since 2005 new drugs had come out. We opted for Tysabri (a once-a-month infusion). Of course, it was a fight with the medical aid to get approval so for the first year I had to dig deep and pay for it myself. I brought this to Rare Diseases Attention, and they put me in contact with Elsabe Klink Attorneys and we fought our case. In the end, we did win, and it was due to teamwork between Rare Diseases SA and my neurologist who engaged the medical aid to bring to their attention that by not being on Tysabri, they will in the end, land up having to pay more for me as I regress.
After we found our surrogate, things went really. I was on the new meds, feeling better, and I will never forget what she said. “I will carry your baby, and you must be strong to be a mother”. So, my first son was born Aug 2013 and second son born 2015 (both by the same surrogate). I have been on Tysabri now for 8 years and live a full life. I did change jobs and went into our group of family businesses – so now I run companies, have a healthy family and am in NEDA state (no evidence of disease activity).
Talking about RARE, we did have another challenge. Life is full of surprises. My second son landed up being born with a very rare heart condition called Ebstein’s Anomaly. And to add to that, he had a germ cell tumour. But that was operated on in Jan 2016, and he had open heart surgery for his Ebstein’s anomaly in June 2016. Today he is a healthy feisty and robust 7-year-old.
What I can say is this.
We have overcome these obstacles with dedication to the right mindset. I believe that taking care of your mental and emotional well-being is 80% of the success. Today, I see a psychiatrist once a month to ensure that I maintain my overall mental health and I have my monthly IV infusions in hospital once a month. But I am one of the lucky ones. I had the support and the financial access to fight for my rights. But why would that make me any different to anyone else. Why can people who have a rare condition suffer the consequences of not being able to afford the often rare medication available to them. Do we not all deserve the right to a full and healthy life even though we were diagnosed with something rare.
On MS Day we recognise all MS warriors, supporters who are family, friends, colleagues, and MS Societies like MS Western Cape who do everything in their power to bring access and equality in healthcare for patients who have MS.