Facciolita and Primary Lymphedema

The story of Nicole

My Name is Nicole (or facciolita as my social media persona), and I was born with a rare genetic disorder called WILD syndrome that causes lymphatic malformations and therefore chronic swelling in most of my body, and that is what is called Lymphedema. I was diagnosed when I was 9 months old.
What does all that means? In simple words, that I was born with a swollen arm. That’s the reason why you see me wearing the colourful gloves in photos. But as I got older, the Lymphedema (being a degenerative condition) has also progressed. I now have swelling almost everywhere in my body, even lymphatic abnormalities in organs, and a collapsed lung due to fluid build-up. On a day-to-day it means I have to manage the swelling and minimize the accumulation of fluid. That is achieved with a good diet, an active lifestyle, and most importantly, LOTS of compression. I frequently get lymphatic drainage massage therapy, wear bandages on a daily basis for compression therapy, and wear 7 pieces of compression garments EVERY day. The biggest challenge I’ve had to come to terms with is that I had to live life differently from everyone around me. That I couldn’t always do what my friends were doing. That I struggled trying to follow the ‘normal’ pattern in mundane things like commuting, eating, sports, clothes, to name a few. In my journey to acceptance, as a duty to my fellow Lymphies, I decided to open up in an attempt to bridge the gap of knowledge and guidance for Lymphedema. In that process, with my honesty and transparency, other people started to open up about their own journeys, but similarly as I did for 30 years, had kept their truths in the dark. Knowing there were others going through something changed my perspective and gave me a sense of relief. It made me realize I was not alone.
I am passionate of changing the narrative associate to the condition, because after all, I am not alone and my challenges are not that unusual. After thousands of posts, millions of views, a couple dozen of podcast episodes, I can confidently say we have crated a community that is stronger than ever, better informed due to the power of patients, and feel less alone. <3

We are not alone