"What matters most to me is.......Being able to help others advocate for themselves and making sure people with lymphatic diseases feel seen and heard."
Written by Elizabeth, living with CCLA - United States
My name is Elizabeth, and I’m 31 years old. I’m a fiancée, a daughter, a sister, a friend, and a very proud dog and cat mom. I love spending time with the people I love, making memories with my fiancé, Jim, and taking care of my animals. I’ve always been someone who loves caring for others. Before my health changed my life, I worked as both a Direct Support Professional and an esthetician. I never imagined that one day I would have to put so many parts of my own life on hold because of a disease most people have never even heard of.
My journey with lymphatic disease began when I was diagnosed with a rare and complex lymphatic disorder called Central Conducting Lymphatic Anomaly (CCLA). My lymphatic system does not function the way it is supposed to, and the disease has affected multiple parts of my body. I have experienced chylous fluid leaking into my chest and abdomen, repeated pleural effusions and lung collapses, and I have undergone more procedures and hospital stays than I ever imagined I would face at my age. I eventually needed a Denver shunt (tube placed inside the body to drain excess fluid from the abdomen) to help manage the fluid accumulating in my abdomen.
Living with CCLA has meant learning how to live with uncertainty. Some of the hardest obstacles have not only been the procedures or hospitalizations but accepting that my life does not always look like the lives of other people my age. There have been jobs I could no longer do, plans I have had to put on hold, and days when my body simply could not keep up with what my mind wanted to do. I have dealt with debilitating fatigue, limited time on my feet, infection risks, and serious complications, including blood clots. At one point, I developed a pulmonary embolism despite already being on a blood thinner. I later developed a mass on my tricuspid valve (one of the four valves in the heart) and spent weeks facing the possibility of open-heart surgery. Thankfully, after treatment with anticoagulation (medication that reduces the blood's ability to form clots), the mass broke down and surgery was no longer necessary.
There have been moments throughout this disease when I have felt like my entire life revolved around surviving the next complication. But I have also learned how much strength can exist alongside fear. I have learned to advocate for myself, ask questions, keep fighting for answers, and continue showing up for myself even when I am exhausted. Most recently, after having to step away from working because of my health, I fought through the disability process on my own and was finally approved. It was never something I wanted to need, but receiving that help meant finally feeling heard and acknowledging that what I live with every day is real.
One of the hardest parts of having a rare disease is feeling like no one around you truly understands it. That is why finding the Lymphatic Malformation Alliance and the lymphatic anomaly community has been so meaningful to me. Lymphatic Malformation Alliance has helped create a space where people living with these incredibly rare diseases can find information, resources, advocacy, and, most importantly, each other. There is something powerful about realizing you are not the only person fighting a disease that so few people understand. Being part of this community has made an isolating diagnosis feel a little less lonely and has reminded me that our stories deserve to be heard.
If I could say one thing to someone who has just been diagnosed, it would be this: keep fighting for yourself. A rare diagnosis can make your future feel frightening and uncertain, and there may be moments when you feel like no one understands what you are going through. Find the people who do. Ask questions. Advocate for yourself. Celebrate every victory, even the ones other people may not understand.
Your life may look different than you imagined, but different does not mean that your story is over. I am still learning what my future will look like, too. I have had to put pieces of my life on hold, change plans, and fight battles I never expected to face. But I am still here. I am still planning my future, loving the people around me, making memories, and fighting for the life I want.
Rare disease may be part of my story, but it does not get to write the ending.
