Hi! My name is Retha. I am a 24-year-old female diagnosed with Myasthenia Gravis. I’m also a speech, language and hearing therapy student at Stellenbosch University. I have had a #thymectomy via full #sternotomy due to an enlarged thymus gland (that means I have a 15cm scar through my cleavage), a muscle biopsy of my right deltoid and other minor surgeries since my diagnosis in 2013, just after my 20th birthday.
Myasthenia Gravis (MG) is a neuromuscular autoimmune disease. This basically means that my immune system attacks the receptors that are meant to convey messages from your nerves to your muscles.
This leaves me in the awkward position of frequent falls, droopy eyes, shortness of breath, some drooling and an immense hate of stairs. I also sleep a lot, and I mean A LOT. My symptoms include, but are not limited to, severe fatigue, muscle and joint pain, balance issues and severe muscle weakness which leads to difficulty breathing, using my limbs, seeing, swallowing and speaking. Patients who suffer from MG are often referred to as snowflakes, seeing as the way the disease manifests itself is quite unique to each person. Before falling ill I used to be a lover of all things active, especially running and hockey. I loved the rush of running, scoring and sweating. It made me happier than I thought anything else could.
Then I discovered my passion for helping others, which is why I decided to study speech therapy. My passion for my degree and profession is what keeps me motivated when times get tough. Being chronically ill with a suppressed immune system has proven quite challenging in the clinical setting of Tygerberg Hospital, but I have found wonderful support from Stellenbosch University, especially the speech therapy department. I was devastated when my health became so poor that I had to take medical leave from university, but luckily after 4 years of many infusions and different medications I seem to have finally found a treatment plan that works!(expensive as it may be) I found that being in your twenties and chronically ill can be quite frustrating, seeing as most things your peers take for granted, bring you ceaseless amounts of joy.
However, I have also seen my illness bring out the best in those around me. It made me appreciate the little things in life a lot more. I have made many friends during longer hospital stays but my family will always be my pillars. And the friends who became family too. Without proper support I would not be half the person I am able to be today. An important part of adjusting to a life with chronic illness is adapting to your new circumstances. Sometimes our symptoms can limit us, but by compensating we can sometimes regain some form of normalcy. We can blend in a little more. The most important part is to never lose hope and always keep fighting. Life is beautiful.