Meet The Members

In March 2016, nine years after being treated for cervical cancer, I noticed swelling in my left ankle, and within a week my entire leg was swollen. Little did I know how my life would change.

I have been living with lymphoedema in my left leg since April 2019. I have primary lymphoedema and like many others it seemingly started out of nowhere; in my case, at work one afternoon.

After 5 years of struggling physically combining Lymphoedema and work, with bad some nights getting upstairs after work I took the decision (whilst in hospital on a drip with cellulitis) to take medical retirement from work.

The purpose of this article is not to make you feel sympathy for what I have been through with diagnosis, surgery, and radiation. Rather, it is to pass on the story that brought me to a place of learning about post breast surgery needs, lymphedema, some support structures, knowledge, and guidance that worked exceptionally well for me.

I’m happy to share the highs and lows of my experience over the past ten years, which seem to resonate with other member stories on Matt’s brilliant site.  I just want to do what I can in some small way to help others.

A warm hello from “Hessen” Germany. My name is Jürgen Jakob (57) married, two children, working and suffering from primary lymphoedema in both legs.

I am the middle of three children, my eldest brother did not inherit lymphoedema, but we other two did.

In 2009 after a couple of episodes of feeling like my leg was heavy and a bit swollen after exercise, I was diagnosed with secondary lymphoedema in my left leg, it was termed as ‘mild’ and I’d already beaten cervical cancer, how hard could it be?

In 1999 I had a fall which resulted in my left leg having an indent. I went to A&E and was told go home put your leg up and you’ll be fine.

3 months passed and I was out one night and my leg felt very heavy, I had what I can only describe as half a football on my leg filled with blood.

My lymphoedema journey started in December 2019 shortly after having surgery for aggressive prostate cancer. Before surgery my consultant had told me she was going to carry out a non-nerving sparing procedure which included the removal of inguinal lymph nodes. She warned me this would leave me with lifelong conditions such as incontinence and erectile dysfunction, but at no stage was lymphoedema ever mentioned.

I was diagnosed with stage two Breast Cancer (triple negative) in December 2006. I underwent a bilateral mastectomy (both breasts removed) in January of 2007. Then followed by chemotherapy and radiation that winter throughout the summer. Shortly after that I developed lymphedema.

Even though I was born with primary Lymphedema, I was misdiagnosed for over 30 years, leaving me disabled and isolated. I thought I was the only one who was suffering in silence. But, after learning the truth about my condition, I realized that this community needed a voice.

Hello, I see myself as a breast cancer survivor living with lymphoedema. My lymphoedema to give it its correct name is Breast and Posterior Chest Wall Lymphoedema.

Being asked to share my experiences isn’t something I’ve had issues doing throughout the years. Knowing what to write is hard to do. It’s hard enough trying to explain to someone verbally how this condition has shaped my life.

I have been battling an incurable condition known as Lymphedema (LE) since 2001. Back then, there was very limited education about Lymphedema, making it incredibly difficult to access information and much needed medical care. The lack of resources fuelled my passion for overcoming this condition and helping those in the Lymphedema community.