What does Lymphoedema look like across the world?

I was born and raised in the South East of the UK just outside of London in a sleepy village called Prestwood. In my university days in Southampton, I would leave for the semester and come back home a few months later to find that nothing had changed. Mum might have reorganised the entire kitchen (every year without fail) and Dad might have sprouted a few more ear hairs. But, other than that, not much seemed to happen in our neck of the woods.

When I was diagnosed with lymphoedema my life changed somewhat. I’m still heading in the same direction, only now I have new challenges and different priorities. It was my last Christmas in Southampton and the following summer I would be heading home again.

It’s safe to say that in Prestwood, lymphoedema was not the talk of the town. I had no one to chat with, not even my doctor, and so the condition soon became very isolating. I swept it under the rug and rarely brought it into conversation, unless, of course, someone spotted that one of my legs dwarfs the other.

I didn’t even wear my compression stockings as I wasn’t aware of the risks. “Hey! I’m young… there’s no way one swollen leg will keep me down” I would think, and it didn’t. Until June of 2017 where I was brought back to reality by cellulitis, but that’s a different story.

Post cellulitis, my lymphoedema network grew somewhat. I’ve met therapists and doctors, and connected with other lymphies who, just through documenting their experience of lymphoedema online, have expanded my thinking towards the condition.

However, irrespective of this global community, those from the UK with lymphoedema still lack the support they should be receiving considering the severity of the condition. We are blessed with a superb NHS which sadly, in recent years, has been suffocated by politics meaning lymphoedema does not get the attention it deserves. Primary patients will struggle to access a community who understand the condition and, upon diagnosis, there’s no standardised route of care.

For me, post diagnosis felt like being dropped off at the gates on the first day of school, not knowing where to turn, with a complimentary ‘off you go’ thrown in for good measure. I found it hard to explain to my friends, family and colleagues what lymphoedema was, why I had it, and what on earth I was going to do about it. The condition is not in the spotlight. In fact, lymphoedema is only beginning to gain exposure in the medical world due to its relationship with cancer.

It doesn’t come cheap either. Therapists, bandages, pumps, compression garments, the list goes on. There’s no way around it – either find the money, or swell. Lymphoedema has no bias – It doesn’t pick you based on your habits. Quite the opposite, it turns up unannounced as the result of trauma like a sports injury or cancer. Sometimes we inherit the condition and when it rears its ugly, complicated and swollen head it leaves the whole family guessing who carried the gene in the first place.

However, in spite of all this, the UK remains a world leader in health care. Lymphoedema might be low down on the list but compared with most of the world, the condition is manageable as support is there (you just need to dig) and our natural and social climate lends itself kindly to those suffering with it. By this I mean it’s cooler in the UK than in many countries, and as a result we have less disease. Although socially you will still face jeers and discrimination, you are likely to fare better in this part of the world where, due to an arguably more “progressive” society, there might be more understanding.

But of course, this is just one opinion of a twenty-four year sat in a hostel somewhere in Bangkok. I often find myself comparing my struggle (it’s not always a struggle mind) with other peoples. How do other Brits cope? Is the “lymphie life” too expensive, unmanageable or inaccessible? More poignantly, how do those suffering with lymphoedema cope in parts of the world where healthcare isn’t as easily accessed? It’s an important conversation to be had as there is not one country that won’t feel the effects of lymphoedema, whether that be primary or secondary.

So, if you are reading this I would love to hear your experience of lymphoedema and how it’s defined by where you live and who you are. It’s a sensitive topic, but the more we talk about it openly, the more exposure and support we can give one another.

8 comments

  1. Genevieve · December 30

    “Post diagnosis felt like being dropped off at the gates on the first day of school, not knowing where to turn, with a complimentary ‘off you go’ thrown in for good measure.” – I couldn’t agree more! I was diagnosed just over a year ago and I still feel like this. I’m in Arizona (USA), and for four years prior to diagnosis I worked with some of the best doctors in the country and spoke to them about my post-pregnancy edema, and none suggested Lymphedema. I’m now part of the Mayo hospital network and there are a surprising amount of practitioners interested/educated in LE, but you have to find them. Getting good care for yourself is like a scavenger hunt, and one clue needs to the next. Stateside, there are a lot of advocacy groups and online support groups, but with my own community and circle of friends, I mostly go it alone and spend a lot of time educating others. From what I can tell, most of us have a similar experience.

    Like

  2. Ganga Kadirgamar · December 30

    a fascinating read as always – having been a part of the NHS for more than 30 years, sadly, I have seen monies used and abused, however, seen the incredible work done too – you’re right, at least we have a NHS, on the whole we do get it right, but demands and expectations are increasing, and unlike you, folk aren’t taking the responsibility of looking after themselves, and the consequences of that are not good – we all need to take ownership of our health, optimize staying well, and be thankful and grateful rather than critical of our NHS – just wish Jeremy _unt, the Government and the public would remember what the NHS is about!
    You’re right JB, folk need to think about folk in countries where there is no NHS, money is scarce and poverty is rife.
    Hope you and Charlotte are having a fab life experience and enjoying the sights and sounds of this amazing world xx

    Like

  3. Sydney Dallas · December 31

    I haven’t read up on lymphoedema before and will be doing a ton of research into it now. It’s devastating how much medical care costs, and I agree, I am absolutely terrified for those in my condition not fortunate enough to have the support that I have. The cost of medical care is something that really needs to be brought to light!! Wishing you the best ❤ Great post.

    Like

    • leftlegfirst · January 13

      That’s wonderful to hear Sydney 😊 thanks for showing such interest and support! It’s odd, medical needs vs costs are so wrong. It makes me so sad for people 😔

      Liked by 1 person

  4. j bradley · December 31

    Great post however its been linked to cancer since the 80s…Prof Mortimer in London was doing research with patients way back then and saw me as I was a 17 year old with NO cancer !! Obviously I was very happy to help in any research cos I was young and wanted a cure . 33 years later things have moved on with more fashionable compressions , some surgery being a success and management . However in terms of recognition by government …GPs not knowing what it is… we still have a long way to go so fight the good fight and maybe our ancestors will have a better time of it , or a cure ! x

    Like

    • leftlegfirst · January 13

      Fascinating! Bit before my time (I’m a 90s baby) – can’t imagine how difficult it must have been back then when it’s this hard now! I think as cancer has gained more spotlight, so too has lymphoedema… But yes, as you say still a while to go yet.

      Like

  5. Cheryl Erpelding · December 31

    Thanks for sharing. I have had the SAPL surgeries and now in the Ubenimex drug trial http://www.LymphedemaSucks.com for the details

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s