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.

My journey to lymphoedema started with a prostate cancer diagnosis in May 2019, although at that time I had never heard the word lymphoedema. Now, of course, I know it all too well.

My story starts when I was 12 years old, and I realised my left leg was bigger than the other. It then took 4 years and 3 bouts of cellulitis to be properly diagnosed with primary lymphedema at the age of 16. I’m now 20 years old and am here to share my experiences, and to help others on similar journeys!

When I was 27 years old, I was diagnosed with Hodgkin’s lymphoma – cancer of the lymphatic system. In my case, the lymph nodes in my neck, under both arms and in the middle of my chest were affected. While I can trace my symptoms back seven months prior to my actual diagnosis, my cancer was not investigated until after I made one very spontaneous, fateful decision during a shopping trip.

Some months after surviving aggressive breast cancer, my right arm had swollen to an abnormal size. I ignored it for a while thinking it would normalise, but it didn’t. I visited my surgeon, he looked at it and said “oh dear……you have Lymphoedema “. “What’s that?” I said. He responded in a dismissive way, not explaining the problem, telling me to see a physiotherapist.

One night during lockdown (then age 13) whilst taking a shower I noticed I had a swelling in my
lower abdomen towards the left-hand side. It didn’t hurt and I hadn’t knocked it or injured myself.

Mum booked a Doctors appointment but because of lockdown it was a telephone call back. They agreed they needed to see me face to face to see what they thought.

I’m a 40-year-old living in Nairobi, Kenya. In Dec 2022, I noticed my left foot hurt when I put on my shoe. A month of diagnostic work with associated theories for the source of pain and swelling, and I was told it was lymphedema.

I am so newly diagnosed it is hard to completely understand where I go from here. I am scared, depressed, overwhelmed and angry.

I have Lymphoedema in my left leg. I am still early in my lymphie journey and to be honest still coming to terms with the fact that I have a chronic health condition. It has been a great comfort and inspiration to me to recently speak to and meet other people with Lymphoedema and hope by sharing my experiences I can reach out to others and help them.

I developed secondary lymphoedema, most severely in my right leg, as a consequence of surgery and radiotherapy for prostate cancer. My lymphoedema is currently well-controlled by compression stockings.

I have secondary lymphedema because I suffered from lymphatic filariasis. After 15 years of living with lymphedema, and feeling lonely and misunderstood, I decided to educate myself about the condition. I also decided to look for people who know what it is to be a lymphedema thriver and help those still in the dark.

My story starts in 2005, when at the age of 27 I developed primary lymphedema in my right leg while training for a marathon. I was working as a physical therapist, although even with my education I didn’t understand why my leg was swelling for no apparent reason before being diagnosed. I am now a myofascial release and lymphedema therapist and feel it is time to share my journey so that it may give hope to others living with lymphedema to know that you are not alone!

It was during this time that I realised I needed to advocate for myself on a whole new level and Google was telling me it could be something called lymphoedema or compressed veins. My doctor wasn’t going to be able to help me.

At age 9 my older sister noticed that my left leg looked bigger than my right leg. My mom was concerned, so she took me to the Children’s Hospital of Philadelphia, USA.

I had a lymphangiogram in my left foot and then a month later they performed a left groin lymph node biopsy to rule out Hodgkin Lymphoma and other pathology.

I’m a 25-year-old dancer living with lymphoedema in my right leg. I want to share my journey from diagnosis at 16 to performing in front of thousands of people. This is everything I’ve learned about my diagnosis, treatments, setbacks, resilience, self-acceptance, and not giving up on your passions. If you’ve ever felt defined by lymphoedema this is a reminder that you can still chase your dreams, compression garments and all!

6 months after a routine Hysterectomy in 2014, I was hospitalised with Cellulitis in the genital area with no known reason why.  A scary rollercoaster ensued.

Up to 250 million people around the world live with lymphedema and I’m one of them. For most of my life, I pushed aside my struggles. I wished I didn’t have it and did everything I could to hide it. As I’ve come to learn, that feeling is all too common among us lymphies.

10 years after a biopsy in my groin, and the removal of some damaged lymph nodes (but luckily not cancer), I started experiencing swelling in my lower leg and pitting oedema.

Following a couple of years of investigation, I was finally diagnosed with secondary Lymphoedema by Professor Mortimer.  I have now been a sufferer for 20+ years and wear a class 4 compression stocking on my right leg to my thigh and have had regular bouts of cellulitis.

For the past six or seven years I’ve been living with and trying not to be limited by lymphoedema in both my legs and my groin.

My journey up to now has had many ups and downs and I sometimes get confused myself by all that has happened so please bear with my story and if it seems a bit muddled that’s because it has been!