What do you say?

I was just browsing through my Twitter Feeds and saw this . . .

It's World Crohn's & Colitis Day today. Support the 5 million people living with these conditions worldwide - twb.ly/KKRq2p

So the idea struck me that maybe it is time we got organised and pressed for an International Lymphodema Day!

It would bring this debilitating condition to the notice of the wider public who know nothing about it. It is important that the NHS and other international bodies increase their research and treatments for all who suffer with it.

Come on all you Lympho Lads & Lassies - lets unite and propose the LSN put some pressure to bear on the powers that be to get us recognition with A WORLD LYMPHODEMA DAY a.s.a.p.!


25 Replies

  • Morning Christo

    Brilliant idea lets do it who do we inject with enthusiasm would it be LSN?

    Certainly to introduce Lympo to a wider audience can only be a good thing. So many people are totally unaware and believe it is something that happens after cancer treatment-----!


  • The LSN was 21 last July so now we need wider advertising bit difficult to follow when it all seems quiet.

  • Agreed. We need to raise profile of lymphedema Establishment will then provide the treatment every lymphedema suffer deserves.

  • Agreed. We need to raise profile of lymphedema Establishment will then provide the treatment every lymphedema suffer deserves.

  • yeyyy go for it!!!

  • Great idea :)

  • good idea.

  • nice one christo!

    now, who decides what gets its own day? world health organisation maybe?

    someone could start a petition & spread it through facebook, i'll sign if that gets done

  • Brill idea.

  • Count me in. How can I help?

  • Hi All

    There is an international lymphoedema day it falls on March 6th each year and was pushed on the lymphoedema is part of who I am facebook page in the UK. Our colleagues in the British Lymphology Society also run a lymphoedema awareness week in the first week of September each year where local clinics run lots of different events throughout the country. Please do remember that the LSN is a tiny organisation with only 3 members of staff and a small team of very busy volunteers! But in terms of general awareness the LSN do have window stickers and silicone wrist bands featuring the ‘lymphoedema matters’ branding which are available either to buy for yourself or to host boxes. If you would like further details then please do ring the office on 020 7351 4480.

  • i agree there should be a day for us with lymphodema everybody else with problems get noticed.not many people know what lymphodema is.it is time people was made aware of it.

  • Yes for sure. I didn't even know or heard anything of lymphedema before it hit me last November . Am learning to live with it but people need to know how we suffer.

  • Great idea, can we start with the hospitals and doctors please?

  • Good to know there is an Interational Day and also an Awareness Week. I know from my membership of a couple of other organisations that they need lots of help to get the awareness raised by members of the organisation, doing things like putting out collection boxes, putting up posters, leaving flyers, bookmarks etc in public places as well as boosting the on-line/social media presence. So maybe we could all get more involved in distributing existing LSN/BLS materials etc on the relevant day/week?

  • Hi christo.

    There is a Lymphies do summer lunch currently being organised on sat 10th August in Birmingham. (U.K) . This will be the 3rd meet. And a wonderful way to catch up with fellow Lymphies. The details can be found on the face book page 'lymphoedema is part of who I am'. Actual venue is still in discussion. All welcome. Hope some of you on here can make it. ??

  • Excellent idea.

    Linked to a sponsored walk perhaps or is that too boring?

  • I think we need to start demonstrating and having sit ins to demand treatment. It is rationed and useless where I live.

  • It would be good to get my shorts on again!!!!!!!

  • I could not agree more. Shout it from the rooftops if we must. I once did battle with my private health insurers who were quite adamant "oh no we don't cover that" When I asked if they knew what Lymphoedema was, I was told well actually no I don't". Didn't know what it was but didn't cover it. I have just been for an assessment for my Blue Parking disc and when I asked, very politely, if they knew what Lymphoedema was I was told, its just water that runs down the legs and causes them to swell isn't it? I looked at the assessor and didn't think I would waste my breath explaining, he obviously knew better than me ( I don't think)!! Needless to say the Blue Badge was declined. I didn't fit the criteria. I'm 79 years of age and walking itself is difficult enough in any case but when the legs are feet are so swollen that I can hardly get shoes on in the morning, Its an almost impossibility.

    I think its a joke this "lets look after the elderly, lets make life as comfortable as we can for them" providing you already have one foot in the grave they decide they will spring into action. Sorry for the rant and incidentally, I do feel extremely sorry for the young people who have this problem. I was 69 when I was first diagnosed with it following a radical hysterectomy, so I really do feel for the younger people who are inflicted with this horrendous thing.

    PS Does anybody know which Member of Parliament would deal with this sort of thing. I'm assuming it would be the Minister for Health but I could be so wrong.


  • So one more reason to sign the petition for international lymphedema awareness !

  • of course, let's do it! I have just sent a petition on facebook about Ireland where the treatment conditions are a complete joke.

    However Let's expand it to the world.

    You can start a petition to represent your country for free and post it on facebook by logging in this following link: petitions24.com/start-petition

  • Please bring yur signature to this petition. It is an international one!

  • Here is an international petition for every country and everybody that wants to fight this ignorance and bring lymphedema awareness around the world. If we collect sufficient signatures, each of us can use it for his own country to request more treatment, more research, more refund and eventually a cure! the only thing you need to do is to put your name, town and country and you are part of this big international movement.

    I also put it on facebook, if somebody has the guts to put it on his wall and collect more signatures from friends and families, it will make it move quicker:

    Here is the link where you can sign: petitions24.com/bring_f...

    Let's fight this cause all together without frontiers !


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