Lymphoedema: A Condition Kept Secret Until Now

Lymphoedema is a condition that affects millions of people worldwide. In America alone, it is estimated that “more Americans have lymphoedema and lymphatic diseases than AIDS, Parkinson’s disease, multiple sclerosis, muscular dystrophy and Alzheimer’s disease — combined.”

Lymphoedema: A Condition Kept Secret Until Now

Why then have so few people heard of it? There are two main types of lymphoedema: primary and secondary. Secondary lymphoedema occurs following damage to your lymph nodes or vessels, often as a result of surgery, radiation treatment, cancer, infection or obesity. Primary lymphoedema results from a developmental abnormality in the structure or function of the lymphatic system. Both lymphoedema forms manifest in the same way: the damaged lymph system reduces the capacity for lymphatic transport or even a complete failure of Lymphatic Drainage. This leads to swelling in one or multiple limbs, usually the arms and legs.

Sarah Jouanny is a Communications Specialist, former model, primary lymphoedema sufferer and mother of two. It was during her first pregnancy that she started to notice swelling in her left leg: since her diagnosis in 2013, she has spent her time working to raise awareness of lymphoedema. Having established blogs that shed light on the condition and offer resources to those suffering from it, Sarah now works full-time at JOBST, striving to help individuals with their lymphoedema by spreading the word about compression garments.

Through Sarah’s story, we see people all over the world mirror her experience. With her first-hand familiarity helping to show what lymphoedema sufferers go through on a daily basis, we hope to crack open the topic and bring it into the open; no more hiding and no more questions without answers.

Why me?

Wondering who is most at risk of lymphoedema? Here are some quick stats to help paint the bigger picture:

  • Lymphoedema affects approximately 240,000 people in the UK
  • Primary lymphoedema is estimated to affect 1-3 of every 10,000 live births worldwide
  • The World Health Organisation estimates that over 150 million people worldwide suffer from secondary lymphoedema

Living with lymphoedema

Lymphoedema is a chronic illness with no known cure. This means that learning how to manage the condition is a top priority. Self-managed care for lymphoedema requires rigorous attention and constant maintenance, but ultimately keeps the condition controlled at a level that hinders as little as possible on your daily life.

For most people, the struggle with lymphoedema begins before they are even diagnosed. The development of swelling in a limb can be gradual and hard to detect or it can appear dramatically. Sarah Jouanny first noticed her left leg beginning to swell when she was just three months into her first pregnancy.

“I went to the obstetrician and showed them my leg … There was quite a lot of misdiagnosis at this stage because they thought it could be a blood clot or something to do with circulation. I spent some time at the hospital doing tests, and everything came back negative. I was told to wear compression garments on both legs until my pregnancy was finished; the hope was that the problem would resolve itself. But when I gave birth the swelling didn’t go away.”

A year and a half after her symptoms first presented, Sarah was diagnosed with primary lymphoedema. This, she believes, is “quite quick” for a lymphoedema diagnosis. “Many other people spend years trying to find out what’s wrong – they are told its water retention, or that they are overweight. It isn’t understood there is actually a chronic lymphatic disorder happening.”

Despite her diagnosis, Sarah’s doctors were unfamiliar with the condition and could do little to advise her how to manage it beyond the daily use of compression garments. Unfortunately, this is not an uncommon experience. Lymphoedema remains in the shadows both within the medical community and society at large. With so few resources to hand, the struggle to find practical and useful information can be overwhelming. For Sarah, this inaccessibility led her to seek help and counsel online. Having found a few lone individuals charting their journey with lymphoedema on Instagram and other social platforms, she was inspired to do likewise. The response was immediate: an outpouring of messages from fellow sufferers led her to realise there were many more people like her out there.

Learning to help each other

From exercise routines, to fashion tips, meal plans and skin care advice, lymphoedema sufferers can offer one another practical advice based upon first-hand experience as well as emotional support. Being able to discuss the day-to-day necessities of managing the condition is invaluable and a lifeline for many people. For Sarah, the aim is clear:

“It’s really about getting patients to the point where they are confident to manage themselves and to be able to identify when things are not good, when things need changing, and to be active participants in their own health in order to have the best outcomes.”

So, what does Sarah’s routine look like now? She tells us that the cornerstones to her lymphoedema self-management are simple:

  • Put on a daytime compression garment upon waking up in the morning
  • An alternative night time garment when sleeping
  • Attend the gym twice a week to engage in muscle pump
  • Receive Manual Lymphatic Drainage massage regularly along with check-ups

The key to finding the right self-care routine for you? Try wherever possible to keep it pared-down and straightforward. The simpler it is, the easier it will be to fit into your day-to-day routine.

“One thing that happens when people get diagnosed with lymphoedema is that they go, ‘No this doesn’t fit into my life. I don’t have time for this’ … But it doesn’t have to be a big time-consuming thing. This is how I try and live my life. I really don’t think about how I’m managing it, even though I’m doing it 24/7 and making a big effort, because it feels very easy and I can manage my time well.”

Sarah’s perspective: Life on the other side

Even for people who have lived with lymphoedema for many years and who have their routine, support and management techniques completely under control, there will still be difficult days to contend with. There are several challenges the condition poses that no individual can overcome on their own, not least the visibility of the condition making it more difficult to feel accepted in society. Alongside this, any chronic problem presents a mental challenge: with no hope for a cure, many sufferers find themselves on a roller coaster of emotions month by month and can fall prey to feelings of isolation and depression.

There is all manner of things that can get us down in life, and lymphoedema is simply one of them. This does not mean that you have to accept it or that it is insurmountable. There are several ways to combat the challenges you are faced with, and, what's more, as understanding and recognition of lymphoedema grows, there is always assistance there when you need to fight the tough days. Sarah has spoken out about the enormous help it offered her to find support: from finding communities online, to joining local support groups, and even enjoying music therapy sessions, just remember that you are never on your own and there is help to be found.

When Sarah was diagnosed in 2013, she was distraught. She had a beautiful new baby to care for, but now also had a lifelong condition to understand and look after for herself. While at times she could not see how she would manage everything, with time and patience she overcame all the struggles put in her path. Today she has two beautiful children, an incredible career, and is happy, healthy and confident managing her condition.

“It’s coming up to 6 years living with this condition and it has been quite a journey – there have been some bad and good days along the way, but there are more good days now. There are many, many different aspects to this story and I think it is a journey people have to experience to learn how better to live it.”

Living with lymphoedema may not be easy, but it certainly has not stopped Sarah and won’t stop you from achieving everything that you want and more. For anyone looking to connect with other individuals who are suffering from lymphoedema, head over to LymphConnect’s community where people can openly discuss their experience. Share diet and exercise tips, or simply enjoy chatting with others who understand the highs and lows of living with lymphoedema.

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Claudia Lymphoedema patient