Site icon Lymphoedema United

Meet the Members

Meet The Members

We are honoured that some of our members wish to share their experiences with lymphoedema with others suffering with this disease. Like the image, you are not alone.

Please send us your experience to hello@lymphunited.com

Click on each case study to find out more about the members…

Matt's Story

After a severe episode of cellulitis in 2011 hospitalised me for two weeks, I was diagnosed with lymphoedema in my left leg, 56% bigger than my right leg.  Since then, I have experienced almost every product, therapy and surgery available. I am happy to share this information to help others.

 

Angela's Story

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.

Tom's Story

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.

Craig's Story

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.

A Member's Story

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.

Adrian's Story

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.

Jurgen's Story

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.

A Member's Story

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?

Kaz's Story

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.

Graham's Story

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.

Tina's Story

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.

Amy's Story

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.

Gaynor's Story

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.

Craig's Story

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.

 

Amanda's Story

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.

Rob's Story

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.

Didi's Story

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!

 

Jean's Story

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.

Gemma's Story

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.

Liv's Story

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.

Stephanie's Story

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.

Julie's Story

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.

David's Story

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.

Nathalie's Story

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.

Shannon's Story

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!

We are honoured that some of our members wish to share their experiences with lymphoedema with others suffering with this disease. Like the image, you are not alone.

Please send us your experience to hello@lymphunited.com

Click on each case study to find out more about the members…

Matt's Story

After a severe episode of cellulitis in 2011 hospitalised me for two weeks, I was diagnosed with lymphoedema in my left leg, 56% bigger than my right leg.  Since then, I have experienced almost every product, therapy and surgery available. I am happy to share this information to help others.

Angela's Story

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.

Tom's Story

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.

Craig's Story

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.

 

A Member's Story

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.

Adrian's Story

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.

Jurgen's Story

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.

A Member's Story

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?

Kaz's Story

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.

Graham's Story

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.

Tina's Story

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.

Amy's Story

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.

Gaynor's Story

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.

Craig's Story

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.

 

Amanda's Story

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.

Rob's Story

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.

Didi's Story

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!

Jean's Story

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.

Gemma's Story

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.

Liv's Story

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.

Stephanie's Story

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.

Julie's Story

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.

David's Story

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.

Nathalie's Story

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.

Shannon's Story

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!

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

Lymphoedema United - You are NOT alone!

Lymphoedema Stories from around the world - Volume 1

34 guests from 14 countries share their story, experiences and top tips.
Supporting Lymphoedema Charities

 

 

 

 

 

 

 

 

 

 

 

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

 

 

 

 

 

 

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

Lymphoedema United - You are NOT alone!

Lymphoedema Stories from around the world - Volume 1

34 guests from 14 countries share their story, experiences and top tips. 

Supporting Lymphoedema charities

 

 

 

 

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

 

 

 

 

Medical Advice Disclaimer

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

All material on this website is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment.

Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime and never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Reliance on any information provided on this website, by our employees and others appearing on the website is solely at your own risk.

For the avoidance of any doubt, Matt Hazledine has lymphoedema and is not a medical professional.

 

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