Hi there! My name is Tové and I am a qualified Biokineticist.
Some people say that I am different due to my patience, kindness and always wanting to look out for others before myself. I believe this is what helps me to excel in my career as I aim to help and care for people every single day. I am always willing to go the extra mile and make sure people have the best outcome possible. I always try to inspire people through the teachings of movement, but also equipping them with the knowledge and physiological aspects to their conditions.
Understanding your condition and why you are taking steps to improve your health helps to empower individuals and strengthen their control over their illness or ailment. I was diagnosed with a rare form of Guillain-Barre syndrome in 2019 known as Pandysautonomia. It took several months to diagnose and was meant to be a short term ailment with possible treatment. I have received extensive help from a neurologist and she has taken great care of me! I have received several bouts of Polygam infusion and I am now on medication to control the symptoms.
I believe the fear with a rare conditions stems from not knowing what to expect each day. Tomorrow will I wake up and feel terrible? Will the medication stop working? Is my lifestyle good enough? What more can I do? How long will this affect my life? In our situation it becomes important to make the most of each day, and even though it sounds cliché we need to cling onto the good moments and rest in the bad.
My passion for life and my work helps to keep me sane, but also positive every day. Of course I do have bad days or moments where I feel terrible, but along this journey I have met so many people who have shared their story and are going through similar conditions. This condition has helped me to find my passion for rare conditions and hopefully in the future I will be able to specialise in helping people with rare conditions. My wish is to inspire, help and motivate individuals who feel they have no hope or no way out. This journey inspired me to write a book about my experience in hopes of giving others a sense of relief and also to motivate them to keep searching for answers and push even when it seems doctors may have no answer.
Having joined Rare Diseases South Africa, even though I have not engaged to its full potential, I have the ability to reach out to those who understand what our lives are like every day. I have received a special gift from them which made me feel included and sharing my story gives me the hope to help others and maybe one day find out more about my condition and where it could have started. I believe the organization is growing and any support from donations, health care practitioners and the community will go to thorough research and an exceptional cause.