I am Radhika. I have Primary lymphedema on the entire left side of my body since birth. I was misdiagnosed for this condition for 6 years due to lack of knowledge and awareness among medical fraternity about this disease. I was born with just a lump around the groin area which eventually disappeared after gentle massage. But the actual turmoil began soon after I started walking, the size of my feet and leg kept growing and so did our worries. My parents roamed all around the country carrying me, just to get the right diagnosis back in the 90’s.
You can imagine considering the current scenario, what a ghost Lymphedema would have been back then but to our relief, I finally got the right diagnosis but management of this condition at such a young age was one heck of a task. Those long stares and random people questioning “what’s wrong with you?” kind of disbalanced my mental state too and how I can forget about those teenage days when not being able to wear a short dress in public or not fitting into pretty shoes could spoil my mood for days (I’m an adult now but who am I kidding that still bothers me sometimes).
I have come to realize one thing while growing up with this condition is that it can only affect you as much as you let it. If you decide to accept yourself wholeheartedly, what society is saying doesn’t bother you anymore. I have started to implement this in my life and trust me ‘IT HELPS’. So, now if somebody asks what’s wrong with me, I try to scare them with big medical terms (kidding), rather than feeling bad about it, I try and educate them so that on this planet there is one more human being who knows about it.
That makes life a whole lot easier if the people around us know that Lymphedema is just a condition like any other disease and can be very well managed if you use the right tools like massage therapy, compression garments and bandages etc. I have recently started using custom made flat knit compression garments and they are game changer. My leg feels well taken care of!!