Adel Khan is a postdoctoral research fellow at the Houston Methodist Center for Critical Care in Houston, Texas. He was diagnosed with a congenital lymphangioma at the age of 16, 12 years after the initial signs and symptoms presented. His story is one of perseverance and determination, of being optimistic in the face of adversity and of learning, not only to survive, but to thrive

As the story goes, I was four years old, playing in my backyard one evening, when I was bitten by an insect. My parents said my left thigh swelled up and I was inconsolable. When they took me to our local hospital, doctors made an incision into the swelling, only to find something unexpected. They told my parents I had a more serious condition but was too young for them to make a diagnosis.

My adolescent years were full of highs and lows. The swelling of my thigh had expanded, extending from my hip to my knee. The surface of my thigh was covered with clusters of blisters that would weep on occasion. Sometimes the fluid was clear and sometimes it was bloody. In the summers, my thigh expands further, becoming indurated (thick and hard) and painful.

For me, the hardest pill to swallow was not my condition itself, but the uncertainty that came with it. Living with an undiagnosed condition comes with its own set of difficulties and emotions.

I remember whenever I was asked why my thigh was swollen, I would laugh and say “I got bit by a bug”, because that’s all I knew. I spent a lot of my free time on the computer, looking for any sort of insight into what I was dealing with. I jokingly credit my proclivity for medical research to those endless Google-search rabbit holes. In appearance, it became peripheral over time. Only when I really looked at myself in the mirror did I notice the anomaly.

As I write this, I cannot recall much of the emotional toll it took on me growing up. Life moves so fast when you’re a teenager; leaving little room to dwell on things you cannot change. I do, however, recall the frustration of my yearly physical examinations. The very first thing I’d ask my pediatrician as he walked in the door was, “what can we do about this?”. Each time, I received a different treatment plan. Exercise, drink more milk, or the worst, it will go away as you age. That meant another year of doing nothing. It was only when I turned 17 that I finally had enough and made the decision to switch doctors. Living in the rural Midwest, one does not have many options to choose from. However, I got lucky.

I remember telling my new doctor about my condition in the new-patient appointment, and he took a sample swab of the blisters and referred me to an interventional radiologist in the city. Everything after that happened so fast. I remember meeting the interventional radiologist at Children’s Hospital of Milwaukee and getting a diagnostic ultrasound, an official diagnosis and a treatment plan all in the same sitting. Excitement, confusion, relief and more clouded my head in that moment.

Putting a name to my condition felt like uncovering part of my identity—the way we trace our roots or our culture.

A few weeks later, I had my first operation; sclerotherapy and lasers—it sounded like a work of science fiction. (Sclerotherapy is a procedure to treat different growth types of the blood vessels.) The recovery process, however, was very much a painful reality.

I had the operation on a Friday and was told I could return to school the following Monday. My thigh was covered in gauze bandaging from the laser therapy. Changing the dressing was the most painful part, as the bandaging had fused into the wounds. The pain, no matter how much it was, never superseded the relief of finally moving forward. Unfortunately, my condition has no permanent treatment yet. The cysts returned, and I received another operation a year or so later. I eventually went off to college. 

As the years went on, I continued to research my condition. Now that I had a diagnosis, my Google searches became more productive. At the time, the prevalence of my condition was one in 40,000 and over 90% of cases were in the neck or axillary region. I had come to terms with my condition and even became thankful that I had not been a part of the 90%. It is truly strange how we make compromises with ourselves and find ways to rationalise. 

As I sit here today, I truly am thankful. My experiences with my condition became the driving force to become a doctor. I knew what kind of doctor I wanted to be, and the kind I didn’t want to be. I learned to be inquisitive and persistent. I learned to find optimism in any situation. There is a saying that doctors make some of the worst patients, so I can only hope patients make some of the best doctors.

I may decide to seek further treatment in the future, and I am thankful for the progression we have made as a community. I previously did not know of organisations like LGDA, a charity that provides support and resources to patients with similar conditions.  Since joining the community, I have met physicians and scientists dedicated to the future of lymphatic anomalies and been given a place to share my story to hopefully inspire others. Whether this has been a life-long journey, or a new diagnosis, it’s important to stay optimistic. Somewhere along the journey I stopped letting my condition define me, and even learned to defy it. I never thought I’d be athletic, so I made the varsity wrestling and tennis teams. I never thought I’d like how I looked in the mirror, so I took up competitive bodybuilding. I always thought my condition was something to survive, so I decided to overcome it instead.  It is a decision you will have to make more often than not. Some days will be harder than others. My advice: embrace the community and embrace this journey that I know you will overcome.

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