Menu
header photo

Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Blog

L-W-O End of year Report 2018

Author: Gaynor Leech, Founder of L-W-O

 

L-W-O End of Year Report 2018

 

This has been an amazing year for raising awareness for lymphoedema and L-W-O.  There have been a few lows but mostly L-W-O has seen supported, recommended and respected for what we do both online and in the Community.

LSMC’s (lymphoedema social media communities) are now growing rapidly in the UK.  On Facebook there are now 6,000 members in the top seven closed groups and these figures do not account for the local or smaller groups that are also growing.  If you add in the public pages, then followers’ amount to 7,500+ my guess is that across all Facebook platforms in the UK there is around 15,000 accessing Facebook through LSMC’s.  This doesn’t account for Twitter or Instagram where younger lymphies join.

Our support group membership stands at 1077, followers on our community page stand at 635, these are not necessarily members of our closed group.  Twitter - between my account & L-W-O we have 300 followers, not many are members of our closed FB group because they are mostly the business end.  Our Instagram hasn’t been around quite as long, but we have 150 followers and since self-care week our numbers have gone up.

We have received tremendous support from Lymphoedema Support Network  (LSN).   Oxford Lymphoedema Practic and Lymphoedema Community for the UK, who have shared our blogs, graphics as have others and on Twitter many of the companies have retweeted our information.  I still believe we have one of the highest social media presences.

The website continues to grow although daily figures do fluctuate however, we have now reached over 301,000 viewings.  The website is constantly being re-written and due to finding a new graphics programme and the generosity of our members who provide photographs we do not have to use as many stock library pictures which gives the website a more personal touch.

Both the LSN Conference and BLS conference were great for learning, networking and I thoroughly enjoyed both.   I am just sorry more of our members couldn’t attend, I would like to see if we can make that possible for next year.

Our local West Midlands Macmillan have continued to be very supportive, inviting L-W-O to events.  I have been on their One Voice committee for Coventry & Warwickshire for three years. This year I have been invited to their Christmas Party, when I thanked Julie for the invite this was the reply I received:

That is great. We feel you are a part of our team. You help and support so many people.”

 

I am Cancer Champion (course 18 months ago) and continue to support screening, especially around the Coventry area which has one of the lowest uptakes in the country.  Cancer screening saved my life. Grapevine Coventry & Warwickshire are extremely supportive and through them I have become a Feel-Good Ambassador and part of their Collective Leaders group. 

Events attended 2018

Pharmacy Seminar

Launch of Asian Women’s Breast Care group plus attending support groups until July

Information Stand John Lewis Hub

Breast Awareness Event in aid of International Women’s Day (Information Stand/Networking

Two Macmillan Health & Well-being Events Information Stands

L-W-O Awareness Day

Small Charities Big Impact Atherstone Networking/lunch

Feel Good Ambassadors Meeting

Collective Leadership Meetings

Ekta Unity Cancer Awareness Event Information Stand/Networking

One Voice Meetings – Macmillan

Meeting with Susie Murray Limprint Project Manager for ILF (International Project Manager & L-W-O member)

Coventry & Warwickshire Year of Wellbeing 2019 Digital Training Day

Self-Care Week

We fully embraced Self-Care Week and this contributed to the growth of our Twitter and Instagram following.  It gave us an opportunity to change some of the language we use to improve the way we communicate with our members.  A very positive week.

 

Networking

This year as part of my networking activities I have been privileged to meet and talk to many HCP’s, meet many small groups doing their best to provide services volunteering in the most difficult circumstances we can imagine in the UK.  Many of whom have become friends.

Global Support Groups

We continue to receive support from Amy Ninjas’ Fighting Lymphoedema Foundation, Vern Official Lymphie Strong Organisation and Steve Kelland Lymphoedema Nexus-Canada.  I have been asked to go to the ILF Conference in Chicago, but we operate on a shoestring so unless I can get funding this is unlikely as I would need to raise about £4,000.00

International Lymphoedema Framework

I have been an Affiliate of the ILF for three years now.  I met Susie Murray in Coventry when she was working in the UK and she suggested we could help with distributing the ILF Chronic Oedema Outcomes survey across our Social Media and a possible involvement with work they will be doing with children in 2019.  We have 50 families in our children’s group.

As you might have seen from my latest blog Dr Melanie Thomas National Lymphoedema Clinical Lead for Wales recently posed a question on Twitter, I then wrote my blog,  https://lymph-what-oedema.com/entries/general/lymphoedema-social-media-community and I received a lovely reply back.

Finances

We still operate on a shoestring from members donations which simply covers my petrol costs, stationary, postage, group insurance costs, website and software.  I run L-W-O from a work top in my conservatory we do not have office, utility or other costs that would be associated with a group of our size.  All utility costs are absorbed into my household budget.  Three times this year it has been assumed by other groups that I get paid.  I do not, I am a volunteer.  Running L-W-O means I must rely on people’s goodwill, without those who have volunteered, supported us with training, and invited us to events, none of this would be possible. 

Membership

Support Group growth has been slow this year.  However,  I am thrilled that the general LSMC is growing, my wish is that we can continue to make our voices heard.

Finally

I must thank our truly amazing members for staying with us, you are the reason I do what I do.

Considering I have dealt with many personal issues this year, I was amazed at what has been achieved and only able to see this when I typed this report, it’s been a busy year.

 

Happy Christmas

To all our Members, Supporters and Followers

Wishing you all Happiness, Love and Peace

 

 

Lymphoedema Social Media Community

Author: Gaynor Leech, Founder of L-W-O

 

LSMC

Lymphoedema Social Media Community

 

“Who else needs more awareness training?”

 

This week on Twitter Dr Melanie Thomas tweeted the above question.  The tweet was about raising awareness of lymphoedema education benchmark statements for lymphoedema specialists around the UK and sent to ILF (International Lymphoedema Framework) Cheryl Pike Lymph Innovate, and BLS (The British Lymphology Society)

 

This woke up the old grey cells and really got me thinking about the involvement so many people have with the LSMC.

 

Let me explain that LSMC’s are not a collective movement, each operate separately, each have unique qualities, they support Primary Lymphoedema or Secondary or both.  There are those that are gender specific and those that represent both.  The top seven LSMC’s in the UK on Facebook closed support groups have over 6,000 members, there are smaller groups aimed at local areas and I haven’t added these in.  Twitter is hard to quantify as is Instagram.  Twitter is a combination of businesses related to lymphoedema, HCP’s and those living with lymphoedema.  Instagram is a fast-growing forum with a younger following with the largest age group range between 25-34 all living with lymphoedema.

Those that run a LSMC all live with lymphoedema, and running these groups is a real challenge because of their own health issues, fatigue, rubbish days the constant battle to get treatment whether it be physical or for mental health problems.  As one of my friendly acquaintances recently stated, “nobody knows how tiring it is running these groups”.  

We are an asset to the lymphoedema community, occasionally we receive verbal abuse, when we get it wrong, we get told.  While the verbal abuse it unacceptable, when we get it wrong then none of us mind if we are then given the correct information but for this, we need HCP’s to work with us and not to dismiss the role we have.  I must give credit here to LSN (Lymphoedema Support Network) and especially Karen Friett who works with us, when appropriate.  The growth of LSCM’s has been phenomenal and I suspect it has left many HCP’s perplexed at our rise.  Our members are trying to understand their lymphoedema and as each group encourages their members to become ‘expert patients,’ or their own ‘advocates,' it does cause unnecessary conflict.  

Therefore, those that run a LSMC also need support, we are at ground level giving support to our members and raising awareness 365/6 days a year often available 24/7, none of us are paid, we are all volunteers.  We need support from the wider lymphoedema community, just think what we could achieve if we all worked together and where appropriate be invited to attend training courses that aren't financially outside our reach.   

Back to the original question;

 

“Who else needs awareness training?”

 

We do

 

Social Self-Care

Author: Gaynor Leech, Founder of L-W-O

Social Prescribing or Social Self-Care

 

Social prescribing or social self-care the new buzz words to beat social isolation.  Yet GP’s in the UK have been able to refer patients to Gym’s and Slimming Clubs for several years.  At last mental health is beginning to be taken more seriously and with our own government finally giving us a ‘minister for loneliness.’   There is an awful long way to go. Social prescribing like art classes, dance classes and many more activities will hopefully become the norm to allow patients to go and meet other people in the same position as them and have a chat and a cuppa making this a social activity.  There are people that go through everyday without speaking to someone else.  This is such a sad reflection on our society so next time you go to your GP ask them if they can prescribe an activity or club for you to join.  Far better than taking anti-depressants.

What does this have to do with lymphoedema?  How many times do those of us who are a part of the LSMC (lymphoedema social media community) hear new members saying, “I am so glad I have found you, I thought I was the only one with lymphoedema.”

 

Lymphoedema is not just one problem

 

Having lymphoedema comes with many problems the physical implications range from mild to severe and have a tremendous effect on our bodies.  But what about the mental health problems that come with lymphoedema which are:

  • Anxiety
  • Frustration
  • Pain
  • Body Image
  • Not being able to find clothes/shoes
  • Healthcare professionals who didn’t cover lymphoedema as part of their training
  • Family, friends who all seem to think you will get better
  • Financial problems

These are just a few of the many things that those of us living with lymphoedema must deal with.  Some of us are better at dealing with this than others.  On a personal level I am so grateful to have a large family and friends who I can talk to, go out for a drink, or a meal with.  I am also lucky that if I want to try something new I have no problem walking into a room on my own.  But this hasn’t always been the case.  Over the last five years I have met many people and I call them my friendly acquaintances these are the people I have met on my lymphoedema and L-W-O journey.  One of my biggest achievements this year was being able to go to the #BLSConf2018 because five years ago I wouldn’t have had the knowledge or understanding to be able to cope with the sheer amount of information, neither would I have had the confidence to do this on my own.  Like many of the meetings, seminars, conferences I go to, I now meet old and new friendly acquaintances so never completely on my own.

I do realise this is not something everyone could do, and this is why I am a big advocate of social prescribing or as I would prefer to call it social self-care.    Fortunately, I live very close to Coventry and there are many people and organisations working towards a common goal to combat social isolation including those of us living with a chronic illness like lymphoedema.  I am thrilled that myself and L-W-O has been invited to be part of this movement and I sincerely hope in the future more of our local members will be able to join us.  From this I also hope I will be able to encourage L-W-O members who might feel unable to get out of the house, to take up an activity, resume an activity and meet new people.

The LSMC place a great deal of emphasis on self-management of lymphoedema and this is extremely important to our physical health because by taking care of our skin, creating a healthy lifestyle and keep moving to keep our lymph fluid flowing this helps us to stay well and control our lymphoedema.  However, it is equally important to take care of our mental health and this is where social self-care is important.  By joining one of the many groups within the LSMC you get to speak specifically about lymphoedema you can talk to people that understand how you feel.  You learn about lymphoedema and in some groups you learn about the research, what’s happening in other countries, you get tips and advice and importantly they are there for you 24/7, 365/6 days of the year.  Some of the groups also offer local support groups, swimming opportunities or even a meal out.

 

Join a group or volunteer

 

I have never had spare money to give to charity, what I have often got is time and I have probably been volunteering since my early 20’s in one form or another and for me personally this helps me get through the rubbish days I experience.  Some days it takes a big effort, but this is me and I enjoy meeting the most amazing people.   One of my biggest pleasures is writing, it takes away my physical and mental pain and gives me a great sense of achievement whether I publish or not. Certainly, it has helped me deal with my lymphoedema.

Social self-care starts with us

 

Social self-care starts with us learning to love ourselves, which will give us the confidence not to lock ourselves away at home, not to let our lymphoedema completely consume who we are.  There are so many activities available to us, often free to join, some with a small cost such as art, aqua, craft, dance, knit and natter, lunch clubs, laughing yoga, netball, support groups, walking groups the list is endless.  So, trawl through the internet, or local paper, listen to your local radio station find out what’s going on in your area.  Never be afraid to ask for help. Ring a friend or family member see if they will go with you, they might like to do something new. The initial step forward is always the hardest but finding a new activity, group or simply a cuppa with a friend is good for both mind, body and your lymphoedema.

 

 

Please remember: Thoughts and interpretations are mine.

 

The Impact of Social Media

Author: Gaynor Leech, Founder of L-W-O

Five years ago, there was such a negativity around social media support groups in the UK from the medical establishment it is a wonder any of us have survived.  Not only have we survived we have prospered.  I know we are not medically trained but we know more about lymphoedema than many of our health-care professionals.  Why?  Very few health-care professionals receive any training on the Lymphatic System.  

 

Those of us living with lymphoedema like myself have had to learn to be our own advocates.

 

I was diagnosed with Breast Cancer in October 2010, I had a successful Wide Local Excision, the cancer was removed with a positive prognosis for the future.  However, it was advised that I should have 15 days of radiotherapy just to make sure all the cells had been ‘mopped’ up.  Little did I know that there was a possibility that my successful treatment would lead to another condition.  That condition was lymphoedema.  I had never been told that this was a possibility and the first thing I heard when my oncologist told me that, it was lifelong and incurable.  At that time, I did not hear it could be managed and treated.   

 

Little did I know then that I was about to embark on a new journey that, would change my life

 

The devastation was immediate not because I had been diagnosed but that there was so little knowledge, education and information to help me understand my condition.  Having to explain constantly to people who think they know how my body was behaving better than I did because they were medically trained.  If you asked them what training, they had received on the lymphatic system you were met with blank stares.  Often, they would huff.  One such professional asked me why this was so important now "it's been around for years, so why do you feel what your doing is necessary?"  Really!  These sorts of attitudes just make me more determined to continue raising awareness.

 

Learning to manage

On diagnosis you quickly learn a new set of life rules, skin management, top priority, drinking more water, watching what you eat because some foods can cause inflammation and finally to keep the lymph fluid flowing to stop it stagnating and causing infection are all part of our daily life challenges.  So, if I was struggling how did everyone else manage? 

Learning to manage my condition without social media for me personally would have been impossible.  When I started this journey in 2013 to raise more awareness, very few UK social media closed lymphoedema groups existed and numbers were small.  By closed groups I relate specifically to Facebook, you can join one of these groups and only members of individual groups can see the posts, offering a degree of privacy.

Closed social media Facebook groups range from those who deal solely with Primary or Secondary lymphoedema or groups like L-W-O whose members have both Primary and Secondary lymphoedema.  There are groups whose sole purpose is for the members to ask and answer questions giving support.  Or groups like L-W-O who also give support in the same way, but when we can, we provide information from across the globe on education, research and anything else that might be relevant to self-managing lymphoedema and improving the life of our members.  All these groups provide a vast amount of knowledge and expertise, the often-simple little tips that make a big difference to self-management.

 

Frustration

Members of L-W-O are all thoroughly fed up with the lack of support that they feel they receive.  The disparity of support between Primary and Secondary lymphoedema is huge.  If you are unlucky enough to be diagnosed with Secondary lymphoedema due to cancer treatment, then support is more readily available at least for the five years you are in the system because of your cancer. 

Those living with Primary lymphoedema which is often genetic, runs in families and caused by faulty or missing genes, if not diagnosed at birth, then an official diagnosis could take years.  At one stage on L-W-O we found that a diagnosis was taking an average of 17 years for Primary lymphoedema.    We have several members that have taken decades to get an official diagnosis.  In the 21st century this is not acceptable.

 

We have a wonderful NHS in the UK however there is still a lot of work to be done in educating the professionals who have little or no training in lymphoedema and this why we who live with this condition must play our part.  Learning to be our own advocates is a challenge but one that has become necessary.

 

Accessing Information

In 2013/14 groups that were easily accessible via personal social media accounts were virtually non-existent in the UK.  Now, there are at least seven good active groups that I know of, all started and run by people who live with this debilitating condition of lymphoedema.  Each group brings a different approach but has the common aim of supporting those of us living with lymphoedema, providing a place to chat to someone in the same position.

While there is some membership crossover between the groups, the above graph shows that the most popular closed social media lymphoedema groups in the UK are now being accessed by 5000 people and that number continues to grow.  Smaller groups exist that I don’t have access to. This doesn’t represent the whole picture because Facebook Pages (open to the Public), Twitter and other social media platforms are not taken into consideration and these other social media platforms have huge followings.

LSN, have the very good Health Unlocked Forum currently with over 3,461 members and their Facebook Page has 5.4k followers.  While this article isn’t about public social media platforms it does show that several thousand people are accessing lymphoedema support and information via the internet in the UK.

 

I am saddened that those of us living with this condition are often having to find our own information

I am thrilled with what social media groups have achieved and the support they offer to their members

 

In the UK we have three professional bodies that we can access they include the Lymphoedema Support Network (LSN), British Lymphology Society (BLS), and the International Lymphoedema Framework (ILF) and I have an individual membership to the LSN & BLS and I am an affiliate of ILF.  LSN are extremely supportive to our groups and they produce several information sheets available to their members which meet the NHS Information Standard.   Their social media presence has also grown rapidly over the last few years.  We also have the National Lymphoedema Partnership which was formed in 2014, sadly we see very little information from this organisation although my understanding is they will be producing a document in October ‘Commissioning lymphoedema services for adults in the UK’.   Our members need to see that lymphoedema organisations are making progress to get this debilitating condition recognised.

One very important note in the UK we call lymphoedema a 'condition', I frequently get lambasted by our Canadian and American friends because in their countries lymphedema is a 'disease'.  My personal opinion is that I don't want to think I have a 'disease', but I do feel strongly by calling it a 'condition' we underplay the significance of having lymphoedema and both the physical and mental devastation it causes to those of us living with this 'condition'.

 

High Visibility

L-W-O’s has a high social media presence with Facebook support group, community page, Twitter, LinkedIn and Pinterest.  Through our social media presence in addition to our 1062 plus membership on our support group with an average weekly engagement of 2.1k, we have 1000 plus followers on our other social media platforms.  We have a global reach and I am proud of the fact that our social media friends in Canada and the USA are willing to share their experiences and knowledge with us.

One of our biggest advantages is this website, it is easy to read, visual, written from a patient’s point of view and is constantly being rewritten.  For the first time in nearly five years we are using less stock photographs and using the photographs our members have sent us.  We have now reached over 280,424 viewings and presently we are averaging 1700 viewings per week.

 

Where do our members comes from?

 

 

L-W-O Age Range

 

 

The benefits of using social media

 

We operate 365/6 days of the year and our big advantage is that we operate around the clock and it is rare that a member doesn’t get a response.  Members feel that we give them a voice, they can ask questions and know within a very short time they have an answer or suggestion how they deal with a certain problem.  We often get a conversation starting with “This will sound like a stupid question”.  My answer is “if you are worrying or needing advice, then no question is a stupid one”.  The other comment we get is “I am sorry for the rant” usually followed by “I have nobody else to talk to”.

Closed support groups allow those living with lymphoedema a platform to have a voice whether it is about the condition of lymphoedema, the pain, body image issues, lack of GP understanding, dismissive attitudes of other health care professionals or even well-meaning non-lymphies who after asking questions still don’t understand how our members feel.  L-W-O has lost count of the times that, after seeing a health care professional our members have left in tears followed by anger and frustration leading to more stress.  

 

Frustration = Stress

Stress is not good for lymphoedema.

 

Those living with lymphoedema, often have other conditions that are not related to their lymphoedema that include various types of neuropathy, fibromyalgia, arthritis, heart and diabetes to name a few.  Anxiety, depression is never far away and is totally underestimated.   On two seperate occasions two of our members were so distraught that I honestly felt that they might not be with us the next morning.  That means I didn’t get to sleep, worrying about them. 

Social Media groups are not qualified to deal with this level of anxiety or depression, yet services to deal with mental health problems associated with lymphoedema are few and far between in the UK.  Thankfully, both members were both online next morning, profusely apologising for the explosions of feelings and acknowledged that the members advice and support had carried them through the night.  This was a steep learning curve and from then on as a group we have got better at signposting to LSN, Macmillan and other appropriate charities or oganisations.  The team at LSN have given me and our members amazing support and for this I am truly gratetful. 

One of my biggest frustrations in the beginning was that information was often provided by are friends in the USA even if it was something happening in the UK.  However, the sharing of information on research, services, articles both in the UK and globally has increased dramatically over the last two years.  The last 12 months the Oxford Lymphoedema Practice has also started to share information with easy to follow graphics.  The power social media has given those of us living with lymphoedema is a voice that should not be under estimated.

 

Embracing our success

Our success comes from our ability to embrace social media, to constantly evolve, to hear what our members are telling us and most of all to share as much as possible the knowledge on research, development, and information from the wider lymphoedema/lymphedema community both here in the UK and globally.  I understand that there are those that will scoff at the closed social media groups, I understand that this is not for everyone, I understand that not everyone will have access to these groups, but they are important because they give those of us living with lymphoedema/lymphedema hope, support and friendship.

 

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has - Margaret Mead

 

 

Source

L-W-O Facebook closed support group insights updated on a weekly basis 

Health Unlocked Forum statistics: https://healthunlocked.com/lsn

Throughout this article you will see two different spellings for Lymphoedema (UK)  -  Lymphoedema (Canada & USA)

All the material on this blog is set out in good faith.  Thoughts and interpretations are mine.  Every effort has been made to acknowledge sources.

 

 

 

 

 

 

 

 

Are we a Community?

Author: Gaynor Leech, Founder of L-W-O

 

This is the third blog to the countdown to our 5th birthday in September.  Our Community Page on Facebook has been trial and error all the way.  When I created this page, I did not have the skills for my own personal Facebook let alone a public page for L-W-O.  My initial thinking was that it would help promote our website and I could add bitesize information that might help others living with lymphoedema.  Maybe by doing so I could get the message out that:

 

Lymphoedema exists, we exist

 

I never underestimate the challenges living with lymphoedema brings to our lives, but it must not define the way we live.

 

Compared to our other social media platforms, growth on our community page has been particularly slow although 2018 has seen an upsurge.

The page was created with a very long URL made up of our title and Facebook account number.  Too long for me to remember or anybody else.  My first post was on the 22nd September 2013 and read:

“The reaction from family and friends when you tell them that you have been diagnosed with Lymphoedema is lymph what?  So, after living with lymphoedema since May 2011 time to give something back to all the people who have supported and helped me.”  Take a look at my website www.lymph-what-oedema.com

That was the beginning of our online journey.  We had a small group of followers and then for me panic set in because people started posting their personal information, this was a public page.  I couldn’t delete their comments and didn’t know how to protect them from all the personal information being posted.  Luckily one of our most ardent supporters made suggestions that led to the birth of our closed support group www.facebook.com/groups/lymphwhatoedema, but this is a story for another day.

On the 19th December 2015 I changed the name from lymphwhatoedema and the very long numbers of Facebook to Lymphwhatoedema – LWO.  By this time, as a group we were using the title L-W-O more. I was never completely happy with the name change on our community page, it never looked or felt right.

By 23rd March 2016 as a group we had our own constitution, Trustees in place and applying for bank account was in process.  Other policies were coming together. Growth was very slow, but the name felt wrong and therefore I changed it to L-W-O – lymphwhatoedema.

In 2016 we started to receive invites to community courses, and events by our friends from Macmillan, Grapevine Coventry and Warwickshire, Warwickshire CAVA just to name a few. 

At this time, I was confused about our purpose because it was unexpected and I was humbled by the plaudits and support we were receiving.   I had a hard time accepting the compliments with one friendly acquaintance saying to another “She really hasn’t got a clue, what she has achieved”.  This was a turbulent time for me, my inner self kept asking do I wrap it all up?  Do I keep going?  The support of our members and the organisations that were now taking notice helped a great deal, but I was still very unsure.  I am sure many of you who have set up similar groups will identify with the way I felt because all this time you are dealing with your own lymphoedema.

You must remember I was officially a pensioner when I started this journey in 2013 I could never have imagined creating a whole new life for myself.  All I wanted to do, was support others so that they didn’t feel the way I did living with lymphoedema.

In one meeting I attended, all the participants where asked “What constituted a community”? There were nods of approval at all the answers, then my turn came.  L-W-O was operating mostly online, so me being me said “Online Community.”  Oops!  Silence, quick in take of breath.  Half the group nodded that maybe that was possible, some where silent and there where others that rudely didn’t think this was possible. That was a turning point.

Our friends started introducing me at Gaynor from the L-W-O community. I picked up the title of activist much to the amusement of myself, family and friends. My hubby of 45 plus years sat raising his eyebrows as if to say who are they talking about?

Finally, on 18th November 2016 I changed the banner of our page to L-W-O Community, by this time L-W-O was being called a Community by so many people.  We have a shortened URL and can’t use the hyphenated lymph-what-oedema because Facebook doesn’t recognise hyphens in a URL.  Now our Community Page is our public face at:  https://www.facebook.com/lymphwhatoedema

 

The above photograph is the launch of Asian Women's Breast Cancer Group, at Foleshill Womens training Centre in Coventry.   I was privileged to be asked to be on the steering committee.

Now I am comfortable with with our page because it also represents both our online work and the community events we are invited to.  The page has received many makeovers from me and in their infinite wisdom Facebook algorithms!  The activist  title has gone and changed to Advocate.

None of this would be possible without our members, followers, volunteers and those organisations that continue to support us.

‘Are we a Community?’   Many of our members have made friends with each other.  We continue to evolve, we have a following right across the UK and although we have had global members from the beginning, 2018 has seen us become part of the global online community.  We have recommendations from our UK community and our global community, we share knowledge and respect for each other because we are the people who live with lymphoedema/lymphedema.  Importantly groups like L-W-O are reaching people who have received little or no support for their lymphoedema.  Lymphoedema online groups are teaching those living with lymphoedema to be their own advocates.

We are a Community

 

I can’t put a better description together of our online community than our Canadian supporter Steve Kelland from Lymphedema – LE Nexus, Canada:

“Shrinking the Lymphedema World while Strengthening the lymphedema Community…upside & down under!”

Developing the L-W-O Website

 Author: Gaynor Leech, Founder of L-W-O

Developing the L-W-O website was challenging, frustrating and rewarding and it's hard to envisage that in September 2018 it will be five years since this journey started.  My only experience of writing websites was family history where I had most of the material in front of me like birth certificates and I wrote a story around the information slowly checking out census documents and bringing life to my ancestors.  The L-W-O website was totally different. 

What name would I use?  Those of you who have followed us from the beginning will know, when I was diagnosed, I kept saying to the oncologist ‘Lymph What?’  Much to my amusement when searching for a domain name having typed in lymphoedema one of the names that came back was ‘lymph-what-oedema’.  How weird is that?  Therefore, is was a no brainer and lymph-what-oedema became a reality. 

The hosting package I use, made it very simple for me to design, write and maintain the website.  I did not completely understand all the workings but slowly over the five years it has developed with a very distinctive style of its own.  L-W-O has never been in the financial position of being able to afford a web designer and so it developed with all its flaws, unusual layouts and stock library pictures. 

 

 

 In the early days we didn’t have our logo, just a green banner with candles, that my GP said was "very calming"

 

How many pages would the website have?  The hosting packages allows for unlimited pages, I started with four pages Home, Blog, Holiday-care and Skin-care and we now have 25 pages covering virtually every aspect of self-management for lymphoedema.  Sadly, it never entered my head in the beginning that we would have to produce pages with Terms and Conditions and a Website Linking Policy, but this is the nature of the world we live in.

 

 

Above the main headings and there are drop down sub-headings

 

Two years ago, I asked one of my ‘friendly acquaintances’ to look at the website as he was a web developer.  His first comment was “this is brilliant, I thought it would be crap” and he went on to say he wasn’t sure what he had let himself in for.  I then asked how I could improve the website and his answer was “more visual content and get rid of the lines and lines of information”.  I asked him “why?” and his answer was simple “people get bored very easily, so break information down into smaller sections, something they can come back to”.  This coincided with the hosting package providing better layouts.  One of the biggest changes that brought the website to life was not having to use the stock library pictures because our support group members gave permission for their photographs to be used and I started taking more photographs.  Now I use as much visual content as appropriate.

 

Five years on we have a strong identity with a colour and logo that's easily recognised in the community and online.

 

The website continues to evolve, for example, the skin-care page started with lots of information on how to look after your skin with a small section on foot-care, all very important to someone living with lymphoedema.  However, the foot-care section grew making the skin-care page long and unmanageable and soon foot-care became a page on its own.  The same happened with the holiday-care page, the question was what happens when you can’t go on holiday but could go on a day out?  Did that require the same amount of planning?  Our members thought that it did, then ‘holiday-care’ and ‘going out’ for the day became different issues and therefore a new page was created.  The website continues to evolve in this way and re-writes of pages also becomes a big part of keeping our information relevant. 

Because L-W-O is independent I can write much more about how lymphoedema affects our lives and where we can get help.  Our lymphoedema must not define who we are and there is so much we can do with a little planning to make life easier.  There is a great social self-care movement that I have been privileged to be invited to in Coventry where social isolation, feel good activities are being highlighted including changing the language we use.  Slowly I will be changing the language we use for example ‘diet’ has already become ‘lifestyle’ and ‘exercise’ has become ‘movement’ I sincerely hope this will give those living with lymphoedema encouragement to self-manage their condition.

 Moving forward the priorities are:

  • Self-management
  • Empower our members
  • Create a strong community that gives everyone living with lymphoedema a voice
  • Change the language we use for example ‘lifestyle’ changes not ‘diet’
  • Continue to work with other organisations so that, together we can have an impact
  • Finally get our message out that:

'Lymphoedema exists, we exist'

 

Will the bubble burst?

Author:  Gaynor Leech, Founder of L-W-O

 

As we approach our website and Facebook Community Pages 5th birthday in September I often wonder whether the bubble will burst?

I was diagnosed in May 2011 with Secondary Lymphoedema, I cannot emphasis enough the anger and isolation I felt, not for being diagnosed, but for the lack of information, the dismissive attitudes of health-care professionals, the general ignorance that surrounds lymphoedema.  Followers will know that I love writing because I find it cathartic, therefore I read as much as I could to find out about my newly diagnosed condition that, started me on a new journey in life that I could never have envisaged for myself.

My journey led to our website and a first for me a Facebook Page www.facebook.com/lymphwhatoedema this was very basic and if I am honest I hadn’t got a clue what I was doing.  Both the Facebook page and website have evolved so much that they don’t look anything like the early offerings.  We started with the name lymph-what-oedema and as we developed that quickly became L-W-O and it is now the name that has become a recognised name in the world of lymphoedema.

Was it an easy journey?  No definitely not, I thought throughout my life I had met people who relished in putting you down, trying to bend you to their will and that now I am in my 60’s I was done with all that.  How wrong was I?  Like everything in life while these people can make your life very difficult they mustn’t be allowed to get to you.  Although these people haven’t gone away completely they are very much in the minority.

L-W-O has achieved many things over the last five years including acknowledgement and respect.  I am very lucky to have a large family, some wonderful friends but over the last five years I have developed a new circle that I call my ‘Friendly Acquaintances’.  These are the amazing people who live with lymphoedema who follow L-W-O across our social media, read our website and become members of our closed support group www.facebook.com/groups/lymphwhatoedema they are my heroes they give meaning to life and make all the highs and lows worthwhile.  For the time being the bubble is not ready to burst and I look forward with our members to moving forward and getting our message out that:

 

‘Lymphoedema exists, we exist’.

 

 

Guest Blog Steve Kelland

Hi, Gaynor - good health greetings from Canada!

Written 5th June 2018: 

"Gaynor Leech - re: the wording used to describe lymphedema/lymphoedema, I suggest you might want to add "progressive" to its unwelcome 'attributes'. The more I monitor social media traffic involving the full range of LE-impacted individuals from neophyte (newbie) to those who are necessarily more experienced (living with LE, including time as un-/under-/mis-diagnosed afflictee), the more I see overlooked or unacknowledged, critically important aspects of LE:

1) it is a disease, not a condition or disorder;


2) it is chronic (so, not a case of 'getting better', as well-meaning people are wont to ask);


3) incurable (so far!) ... (fortunately, more researchers are becoming engaged & interested in the continuum of lymphatic diseases); & ...


4) progressive - while this word often seems positive, depending on context within social affairs, policies, regulations, etc....in this instance it is rather indicative of the persistent, resilient destructive nature of LE. In fact, it is precisely because of this fourth attribute that those of us living with LE must be forever vigilant & compliant with treatment & comprehensive management regimes. We must be 'up to the task'. There is no alternate option.... yet!  Which brings me to

 

5) where organisations such as yours are an invaluable resource in spreading hopefulness & helpfulness. In the tri-part path that many with LE seek out (inspiration, motivation & aspiration in 'progressive' order), you can add, amplify or echo that necessary "voice" of positivity. Ideally, as in your case, efforts move beyond passive awareness, into active pursuit of attention, recognition, care, support & change for the "LE Community". I refer to the "Lymphedema/Lymphoedema Community", which - since establishment of "World Lymphedema Day - 6 March 2016" - no longer recognizes national boundaries in its fight vs. this 'scourge'. We cannot afford any further subdivisions in this community-wide effort...this would only lead to (further) marginalization.
Good health (& good work!) –

Canada - MALE (Male Advocate for LymphEdema) | FB: Lymphedema - LE Nexus Canada
"Shrinking the Lymphoedema World while Strengthening the Lymphedema Community...upside & down under!"

Steve has been a member of L-W-O since 28th November 2016 and regularly contributes thoughts, comments and information which are valued by myself and our members.  We are very fortunate that L-W-O is not only in the UK but now truly has a global following.  You can follow Steve at Lymphedema - LE Nexus Canada

Guest Blog Barbara Brookes

My Story 

Following Breast Cancer Surgery, in 2003, I didn’t develop Lymphoedema until 8 months afterwards and when at first, ‘it reared its ugly head’ - it frightened the living day lights out of me!  I’d been to my Daughters the night before for a meal, with some family & close friends, having gone straight from work I’d travelled the motorway home and after having fed the cat, and followed my night time ritual etc, I retired to bed as I had work the following day.

I arose at my usual time 6.15, feeling a bit flu like, took my morning shower where I noted my left arm felt heavier and was a ‘little pink and blotchy!’ By the time I’d completed my morning dress ritual, prior to travelling the 15-mile drive to work, it became apparent I was feeling so poorly I wouldn’t make it to the car never mind the motorway! I was astounded by just how quickly I began to feel so -so ill.

'What the heck was going on now?'  I recall thinking to myself!

I had begun throwing up without even having eaten four spoons of my breakfast and my left arm was gaining a vibrant red map like appearance, by now I felt so so hot! I also began to shiver as if I’d been in a snow storm! I’d rang through to our main message centre at work leaving a message stating I was going to my GP as feeling very unwell!  I didn’t elaborate too much detail as wasn’t sure who’d intercept my message before Managers arrived (usually much later than any of our team). 

I’d tried to ring my Daughter in Birmingham, but she was by now about to complete the school run plus had to attend a hearing appointment for my youngest (at the time) Grandson (she had three boys all under 10) so I had left a message with her neighbour, and a good friend to me. I’d tried to close my eyes whilst on the sofa thinking ‘maybe if I have a little sleep it’ll pass! So so wrong was I’!  I began really shivering and naturally wanted to pull a throw up over myself but was so nauseated I had to keep going to the bathroom!

When Donna my eldest Daughter had been informed of my dilemma, she had in turn rang my Partner Jon (I had not yet consented to getting hitched, as we’d both married before) and Jon had taken a Management position by working / staying in London at his Mums weekdays and it would be a couple of hours before he could get up to the Midlands via busy morning rush hour traffic! - especially M25 & M40!!

I'd tried to ring for a GP appointment but 'as always'- the phone was constantly engaged!

As I was getting ‘a bit panicky, ‘I rang my Breast Cancer Team at Nuneaton George Elliot hospital where I’d undergone my initial surgery, and early morning ‘though it was’ I knew someone would be there on call duty, I was immediately put through to a Mrs Sheila Differ, (a Specialist Lymphoedema Sister in the Oncology Dept).

Sheila was very helpful, calm, kind and reassuring.

After I’d described to her my symptoms, Sheila explained to me it sounded like I had a ‘severe lymphatic infection namely - cellulitis under the heading of Lymphoedema! and that it didn’t always appear following Cancer surgery, but that I’d need antibiotics immediately, though as I was experiencing such bad nausea, quite likely ‘I’d need to go to hospital to have them intravenously! 

 

I had no concept of what this meant to be truthful!

I rang the GP again and this time got through - where it was suggested by receptionist I try to get to the surgery; however, the surgery was approx 2 -3 miles away and there were no buses from the village I then lived in! (Near Tamworth). I could not have driven with my swollen and now extremely painful arm! No offer of any transport or other means of it were suggested, from receptionist!

I was ready to call a taxi after I’d put down the phone to GP, but then I saw a neighbour through my window who was getting in her car, I opened my front door and called to her ‘were it possible to give her the money for petrol , in return for a lift to the surgery approx 3 miles away, however, she said  'No ‘sorry, I’m already late for work'  and drove off!

My arm was now heavier extremely swollen and painful and crimson red! I could barely stay focused, stand, nor raise my arm up. All this since rising at 6.15 am this morning! I was reeling with how poorly I felt, I’d had to half sit half lie on my sofa as I felt I was so feverish, though shivering I would pass out!

I felt so ill, so scared and alone I just could not believe how I’d deteriorated since rising from my bed this morning.  I drifted in and out of what must have been semi consciousness!

I glanced at the clock it was now 11.25 am.  My front door knocker went Jon stood there saying ‘I’m here! I have ‘never felt so so relieved to see someone in all my life! He’d received Donna’s message and driven over 240 odd miles to be at my side! He took one look at me and said ‘I’m taking you straight to A & E Dept at George Elliot Hospital! Meanwhile the phone went and Sheila Differ had rang my GP who was calling me to say ‘forget coming to the surgery, go straight to hospital ‘- I replied I am, my partner has arrived from London and he’s taking me!

I was admitted immediately by a Consultant Dr, and varied numbers of ‘student Doctors kept coming to the cubicle I was in, to see my arm and make notes, as I awaited a bed on a ward! They’d had the condition ‘touched upon lightly in their tutorials but had never actually had in depth details or seen examples of the serious conditions!  ‘I felt too awfully sick to concern myself; or resent me ‘feeling like the student’s afternoon Matinee show’.  By now it looked as if I’d had bright red paint thrown up my left arm or been burned!  They had ‘ever seen anything like it they whispered as they made their interpretations of ‘in medical terminology ‘what was happening to my arm!

A cannula had been rather amateurly attempted 3 times in my right wrist by a couple of the poor students, in order to later administer the antibiotics Inter-Venously!

Although they looked worried at the outcome, I feel sure ‘I beat them with my concerns as I watched my life blood drip all over the bedding’! They eventually resolved to fetching a Consultant ‘somewhat more experienced‘ to achieve the end result - ‘thank goodness!!’ At last I was admitted to the ward, kept on IV antibiotics and stayed there for three long days, when I was informed of the rules that would ‘dominate my life long and quite debilitating condition forth -with! ‘

(1) I would have to wear compression sleeve to reduce swelling once infection was ‘in hand’

(2) No injections including IV drips, or needles of any kind, no blood pressure cuffs, were ever to be used in that arm!

(3) I would need to take great care of the skin, keep it clean, supple - & prevent the risk of mozzy bites / or other insect bites! To avoid infection!

(4) As I had a pet cat be careful of scratches!

(5) Gardening - thorns, I would now have to wear gloves to protect my left hand from any risk of infection where the skin could be broken!

In fact, to generally to monitor every household chore and its risks on a daily basis for the rest of my days!

The ‘Good news’ I was informed by my Consultant was! - that if I promised to rest completely, also complete a ‘full 14-day course of antibiotics‘ or more if necessary following my release from my hospital bed, he would consider my discharge, ‘This plus a referral to Mrs Sheila Differ for compression sleeve fitting, plus regular appointments to ensure my condition ‘Lymphoedema’ was being monitored until it was felt I was confidently ‘self-managing it’.  I was due to be discharged on the Friday, saying I would return to work on the Monday! “Then if that is the case, said the Consultant, I shall not discharge you!

I explained that since losing time from work through Cancer surgery and follow up treatment, the previous year, my Managers had made life ‘doubly hellish’, they made it very clear my job was under potential threat, and I could have my employment Terminated! Although my youngest Daughter was now in her own accommodation I was very aware that my home was at risk!

I still had a mortgage to pay and this was so frightening!

The Consultant was extremely supportive and said ‘I shall write to your Managers making it very clear I am signing you off work for at least six working weeks’!  We shall see if they choose to challenge this ‘in Law ‘they would be acting ‘both foolishly as well as ‘illegally’.

I don’t wish to ‘bore you all with the stressful time I underwent on my return to work’ - where I had been  for over 26 years!, but I felt I had to turn ‘emotional summersaults on a daily basis, ‘ to ensure I stayed employed - with hindsight it was the worse period of my life, including having lost both parents as a child of 6 & 12 years of age! 

However, suffice to say I was extremely bullied, had to fight through an appeal against a written warning for a ‘secondary sick leave period’ - having explained that it should have been included in the period of sickness covering my Cancer treatment as Lymphoedema was as a ‘direct result of life saving Breast Cancer Surgery!

I ‘won my appeal, hands down through the keeping of ‘copious notes of meetings, telephone conversations, and exchanges of emails- in my daily diary!

I am a dyslexic person and suffered ‘bullying techniques - including placing me in locations which far exceeded my then current mileage / travelling time-  to my usual places of work! 

Closing down my post and putting me on a redeployment list where I had ‘only jobs offered at lower salary scales, and on permanent nights!  I was sent to work in an office library, with no windows no telephone no proper desk or chair! any equal pay posts I’d applied for was regularly turned down! Even though there were no real skills gaps! Or training offered to fill any identified gaps within new fields of employment!

They had waited & hoped for me to ‘have had enough to make me resign!

I refused and thought - If I beat Cancer, I’m not gonna let you beat me now!!!

Not conducive to help my Lymphoedema at all, as we all know Stress has a negative effect on our bodies and immune deficit!  Terrible stressful time I’ve practised well to choose to forget!

I eventually took a lower paid post to maintain my mortgage, of course this impacted on my pension outcome, as our pensions were then based on the final three years of our working life income!  I also lost my ‘car user allowance too ‘, so was also financially down trodden!   However, I managed to gain a promotion once in my new position for a year, and eventually I began feeling ‘more content with a new Management structure who valued & respected me, and so I slowly began to recover from the memories of the ‘previous oppressive atmosphere I’d been made to endure!’ 

I also believe in ‘Karma!!!

On a much happier note Jon and I had married, and I feel this was an uplifting and obviously joyful experience, which helped get me through the bad times. We spend a lot of time at work and need to feel as least stressed as possible whilst we are there; I completed a further 5 years before taking my retirement with Joy in 2011. Sadly fate ‘struck us another cruel blow’, as it was confirmed Jon was going to lose his job, at the same time and being profoundly deaf and disabled (we’re both deaf but I use two hearing aids) he struggled to secure further employment!  We had fortunately cleared our mortgage thank goodness and have survived the storm! 

I have managed my condition quite well over the past 15 or so years - having only been hospitalised twice since that first time mentioned above, making three in total!  One time was for two day’s stay on IV antibiotics, the first New Year’s Day night, we had moved town and house to where we now live back in 2005!

Whilst the last time being five days’ in 2014 in my local hospital bed, where the worst spread of infection / cellulitis came on within 3 hours one morning and no prior warning had occurred! (I’ve enclosed a photo of my left arm in this period of infection.

I had been long term member of a Lymphoedema support group founded by Sheila Differ, where I’d been a member for approx 7-8 years prior to later becoming chair - person lasting approx another 4 years! after the group moving the base we used for our meetings! 

Sadly, we had to eventually close our group July 2017 owing to losing attendance of members numbers for various reasons, and being unable to attract new members, due to the policies & politics of hospitals, staffing levels and advertising posters / leaflets being refused or withdrawn.  Not ‘all changes are geared towards progress. Unfortunately.

‘However, ‘In between time I had also joined Gaynor’s ‘on line support group L-W-O, ‘which as ‘I’m sure your all aware’ has grown and gone from strength to strength.   We have witnessed Gaynor and her small team working tirelessly to promote the awareness and seek better information both for patients and medical organisations!

We have seen Gaynor develop her group from just a handful of ‘local on-line people’-  to hundreds, of Global members, to initiate her first Annual Awareness Day, and as such a total success, that it went to a new level with her 2nd one!  Now looking forward to her 3rd one on the 16th May 2018! Which I’m sure will bring the quality and professional content yet again!  I have found this group to provide a ‘wealth of information, support, fun, answers as well as a real passion to ‘promote the education of what Lymphoedema is all about.

 ‘Not only to its members’ but also their family and friends who have a genuine interest’ and on a ‘need to know basis’. Ensuring they are equipped to share with all those affected so enabling them to receive an excellent service, as well as to spread the word making sure that the various Medical professions are bought up to date with all facts relevant to that service! 

I wish to say we’ll done Gaynor, and her team, and best wishes to continue to grow in passion and numbers!  ‘Who better to raise awareness than those of us with ‘first-hand experience ‘of the gaps that still sometimes exist today! ‘ ?  Who better to help ‘close those gaps?

We ‘are the real Teachers, and there is a saying that goes! -

‘When the student is ready, the Teacher will appear!!’ 

‘Together we’re Better’ 

And only by ‘raising awareness can we educate the students of today - towards a better and more knowledgeable ‘Tomorrow!

Kind Regards,

‘Love and strength to ‘all’

B xx

L-W-O © 1st May 2018

Unauthorised use and/or duplication of this material without express permission of L-W-O is strictly prohibited.

Excerpts and links may be used provided that clear credit is given to L-W-O with appropriate and specific direction to the original content.

 

 

 

 

Tamsin Sargeant Guest Blog

First published by Huff Post UK 01/03/2018   Reproduced here by permission of L-W-O member Tamsin Sergeant 

THE BLOG

Living With Lymphoedema After Breast Cancer

I don’t want to have to explain a condition that even my GP struggles to understand

“What have you done to your arm?”

My heart sinks. I don’t want to answer this kindly-meant question about my swollen hand and arm. Wearing a compression sleeve (think Spanx for arms) hardly ever goes unnoticed by anyone looking for the chance to strike up a casual conversation. But I don’t want to have to explain a condition that even my GP struggles to understand. I don’t want to have to explain that I’ve had breast cancer.

You see, I have lymphoedema.

Lymphoedema, pronounced lim-fo-dee-ma, is a chronic (long-term) condition that causes limb swelling and leads to pain and loss of mobility. About 1 in 5 people (20%) develop lymphoedema after breast cancer treatment, if it includes surgery to remove the lymph nodes, or radiotherapy. This is because, simply speaking, the lymphatic system drains excess fluid from tissues and damage as a result of surgery and/or radiotherapy causes fluid to build up and tissue to swell.

My lymphoedema began with dry hands. It was 2012 and I’d just finished chemotherapy to treat a recurrence of breast cancer. Still vulnerable to infection, I was scrupulously washing my hands and noticed that my right hand was puffy. By the time my surgeon had referred me to a Lymphoedema Clinic, a few weeks later, my hand was alarmingly swollen. I couldn’t hold a fork, pen or get my arm into the sleeves of my clothes. Then, fluid started leaking out from cracks in the skin on my fingers. It was horrible. And it wasn’t just physically debilitating, I felt ugly and that, once again, my body had failed me.

With a cancer diagnosis, everything happens quickly: scan - results - treatment. Every new symptom is swiftly investigated. With lymphoedema, everything happens slowly - I wait weeks for an appointment where I’m advised to try out a new technique for several months! I now realise that this approach reflects the fact that there is no cure for lymphoedema and standard treatments, such as massage, compression sleeves and Kinesio taping aim to reduce and control swelling.

I was offered intensive multi-layer bandaging because my hand was so swollen. For three weeks, I made a daily trip to the hospital for my arm to be bandaged by a nurse. Progress was slow. Since then, I’ve learned that reducing swelling is a bit like losing weight, it’s gradual and there are, frequent, setbacks.

Over 18 months, I was able to lose nearly a litre of fluid from my arm. I worked really hard to achieve this - by wearing my compression sleeve daily, a glove at night and doing exercises twice a day to improve the flow of my lymph fluid. Although my arm looks ‘normal’, my hand remains troublesome and unless I wear my compression sleeve every day, the swelling returns with a vengeance. I see a nurse every six months who prescribes two made-to-measure compression sleeves. It takes her an hour to take the twenty-seven or so individual measurements of the length and width of each of my fingers, hand and arm. I loathe it. I hate the daily gymnastics involved in getting my sleeve on (imagine pulling on size 6 spandex pants), the painful blisters that develop between my fingers, the loss of sensation, the stiff, uncomfortable fabric and the poor choice of colours.

Infection is an ongoing worry because the lymphatic system plays such an important role in helping the body deal with infection. I’ve had cellulitis - a bacterial infection of the skin and tissue - at least twice a year and it caused me a lot of trouble last year when I was ill for months following a mosquito bite. Because untreated cellulitis can lead to septicaemia, or blood-poisoning, I keep a supply of emergency antibiotics at home.

Imagine carrying a heavy bag full of shopping all day and the resulting ache in your shoulder. That’s how it feels to live with the constant sensation that one arm is heavier than the other. Elevating my arm - on the back of a chair, across the back of a bus seat, or on cushions - offers some relief.

Then, last year I developed lymphoedema in my left arm, four years after breast cancer, a cruel PS.

Shockingly, trainee doctors receive only 15 to 30 minutes of education on the lymphatic system. This means that that they don’t have the knowledge to help us to manage our lymphoedema. Breast Cancer Charities focus their efforts on lymphoedema prevention. What about those of us living with lymphoedema? We are the forgotten ones. Lymphoedema has been described as the Cinderella of medicine and NHS services are notoriously under- resourced. Women’s instinctive response - relief that lymphoedema, unlike cancer, is not life-threatening - also acts as a barrier to change because it prevents us from demanding better treatments. My advice to anyone newly diagnosed with lymphoedema is to be proactive and educate yourself. Organisations like Lymphoedema Support Network and Lymph-What-Oedema Support are invaluable.

Kathy Bates, the Academy Award-winning actress and spokesperson for Lymphatic Education & Research Network (LE&RN) has bravely - especially for a woman living in the public eye - shared her own experience of lymphoedema. On 6th March 2016, LE&RN established the first World Lymphoedema Day, a collective effort to raise awareness of the millions of people living worldwide with primary and secondary lymphoedema and lymphatic diseases. Inspired by her example, I’m sharing my own experience of lymphoedema for World Lymphoedema Day on 6th March 2018. Help us to spread the word.

by Taboola

View older posts »

Affilate program