Two Years In: Diagnosis to Action

As I begin this blog, I find myself at the two-year anniversary of my official diagnosis. Only now am I starting to receive consistent, effective treatment for the swelling and all that comes with living with this condition. I’m now under the care of a lymphoedema specialist at the Clatterbridge Lymphoedema Centre, part of a cancer hospital in the Wirral, who I visit every 6 months. It was here, for the first time, that I received a comprehensive explanation of what lymphoedema truly is and how it affects the body. I was finally given clear, actionable steps to reduce and manage the swelling in my limb going forward.

I’ve been diagnosed with primary lymphoedema, meaning I was actually born with this defect in my lymphatic system. The swelling first became noticeable during puberty, which is a textbook case of lymphoedema praecox, a form that typically manifests during adolescence.

Recently, I’ve been measured for new Class 3 compression garments, designed to be more effective during my physically active lifestyle, while still offering as much comfort as possible. These should help me better manage my condition as I continue dancing and staying active.

The swelling in my right leg has gradually increased, and is now between 7 to 12 cm larger in circumference compared to my left leg. Based on current measurements, I’m carrying an estimated 2.5 litres of excess fluid in that limb, a 30.2% difference. As you can imagine, this is significantly more noticeable, both visually and physically, than it was two years ago, when the difference ranged between just 0.5 to 5 cm.

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