My name is Pernille, and I have primary lymphedema. I was diagnosed more than 20 years ago and due to ignorance, denial, poor support from the doctors and specialists I met, my leg kept getting bigger and in a worse state. During those years, my leg imprisoned myself and my family. I did not exercise, go for long walks, travel far, go to the beach or wear a skirt. I never talked about it. I felt embarrassed that my leg was so much larger than the other. I was angry “it” was holding me back and upset as it was hard finding clothes and shoes that could fit. I was always worried it would get worse and I didn’t know how to deal with the constant discomfort. I felt that if I did not talk about it I did not have to deal with it.
Lymphedema manifests by swelling and is caused by either a malfunction of the lymphatic system from birth (primary) or an injury/trauma (secondary) and can affect limbs, the trunk, face and neck, genitals or even the whole body. Lymphedema is a chronic, progressive condition of which there is currently no cure. Primary lymphedema is not well recognized among doctors, so patients might suffer for years before being diagnosed. We struggle with the constant risk of skin infections which can create further damage and increased swelling.
From ignorance to enlightment
A year ago, I had a light bulb moment and I finally embraced my situation and my leg. I broke free, I reached out to fellow patients and I educated myself. In this process, I understood that the golden standard for managing lymphedema is Complete Decongestive Therapy which includes compression, manual lymphatic drainage, skin care and exercise. I started to manage my leg as it deserved and use everything there is in the lymphedema toolbox. I now exercise 1 hour every day, I go for long walks, our family has been on a beach holiday, I wear skirts and shorts and I can’t stop talking about lymphedema. Not only has my leg vastly improved and reduced in size but it has been so empowering for me to embrace my situation and manage it correctly.
So, if you are a fellow patient I encourage you to reach out to a local, national, international or online lymphedema community. We exchange information, research and experience to build each other up so we can manage our lymphedema in the best way possible. Together we are stronger.
You can find me on Instagram @the_lympha and along with lots of other patients in the @LymphieStrongInspirationGroup on Facebook.