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Primary & Secondary Lymphoedema Online & in the Community


Nutrition & Hydration Week

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

I was thrilled to welcome Pernille Henriksen as our guest writer this week between us we tackled Nutrition and Hydration working within the concept of living with lymphoedema.  What really surprised me was how much we were in sync as I was writing this blog Pernille was writing along the same lines. Pernille has primary lymphoedema in her left leg and has lived with this for 25 plus years, she is a passionate advocate for lymphoedema and believes in empowering patients to take better care of their lymphoedema by sharing information, news and research.  As an advocate Pernille supports those of us living with lymphoedema  globally. 

My input was to put the information in to posters for an easy transfer on social media which can also be shared. The research I used for writing this blog and the posters was taken from the NHS website, British Heart Foundation and British Nutrition Foundation, I have provided the links. Thoughts reminisces and interpretations are mine.

How food has changed

I was born a few years after World War 2 ended and I had my own ration card.  Sugar and sweets were rationed until 1953 and I remember my Granddad shouting at my Mum that if I wanted sweets or sugar, I was to have them because they had to do without them for so long.  On a Sunday for tea we had cucumber butties and I was allowed to eat sugar cubes.  Probably the reason now why I never buy the stuff.  A friend of our family was an industrial chemist, five minutes with him talking about sugar you would never touch it either, only when it comes from the fruit we eat.

I often smile to myself when I hear about how we should all eat organic food, my generation was brought up organically all our food was grown, vegetables, fruit for pies, fruit for jam making, fruit to nibble at.  No pesticides. You washed away any dirt or slugs from the cabbages and it all tasted delicious.  None of the polished, evenly sized fruit and vegetables that are in the shops covered in plastic.  Blackberries you went foraging for in hedgerows and would come home with tiny scratches and thorns in your arms and hands, no good for your lymphie limbs. Now my arms, hands and legs must be covered with gloves and sleeves.  You went fishing for your own trout and salmon came out of tin.  If you had a glut of apples or tomatoes, you made chutneys and who remembers growing shallots and tuning them into pickled onions for Christmas.  Left over bread went in a bread and butter pudding, or out for the birds.  Nothing was wasted.  You never ate pork when there was an 'R' in the month because there was no refrigeration so only to be eaten in the summer months.  Your iron levels were boosted by eating red meat or mid-week eating liver and onions with mashed potato. Friday you always had fish.

As a child if I was sick with a poorly tummy, I was given glasses of water, and fed arrowroot biscuits, the theory being it would help with diarrhoea and if I was very lucky, I might get a ginger biscuit all to help calm and soothe my tummy and stop any vomiting.   Also ginger biscuits later proved crucial for morning sickness.  Now I would drink a ginger tea.   As a child we would collect fresh dandelions or nettles all believed to have their own healthy properties collected from the bottom of our garden or the countryside to make tea.  If you were stung by a nettle you rubbed a dock leaf on your wound.  


Food was our medicine


Food was our medicine we were brought up to believe that if you ate a healthy balanced diet, that you wouldn't get sick.  Naive or not you decide? In the winter cod-liver oil, rose-hip syrup where given to me daily by Mum because she believed it was good for my health. Orange juice, baby formula and rose-hip syrup came from the baby clinic.  Olive Oil was for medicinal purposes, it was put in your ears to keep the wax soft, while a tablespoon of brandy was added in baby’s bottle to help with colic and teething. Yes, you are reading this properly.  I am sure wherever you live in the world you will have stories to tell.  As a child you played out in the sun and had lots of vitamin D.  In those days we didn’t understand skin cancer, families like mine wouldn't have heard of lymphoedema, even though with hindsight I often wonder whether my Grandma had it as she had huge legs and they were both heavily bandaged.

My first part time job was in a cake shop at the age of 12, I started with two hours and eventually built up to be allowed to work a full week in the school holidays.  You will find it hard to believe when I tell you cakes and biscuits smell, it’s a horrendous smell, even 50 plus years on I still try and steer clear of the cake aisle in supermarkets.  I read somewhere that when shopping in the supermarket you should only shop in the outer aisles because that's where all the fresh food is, luckily when growing up if our family and extended family didn't grow our own food then we had plenty of greengrocers.

When I married, we grew our own food, if we hadn’t, we wouldn’t have been able to eat.  Simple.  Food was seasonal, none of the luxuries we take for granted now where we can buy fruit and vegetables all year round. I learnt to bake, cook and preserve food. I was fortunate that I only had to work part time for those little extras like a holiday.  We certainly didn’t have the pressures that young families are under now, although we did have our own worries, as all generations do.

Then there was four years living in Cape Town in the 1980’s, all that lovely fresh fruit and vegetables. You think? All the best stuff was exported to places like the UK.  However, it did introduce me to butternut squash and sweet potatoes and on a cold winters evening there is nothing nicer than homemade soup with these two vegetables, spiced up with whatever herbs or spices I have at hand.  Other foods such as Biltong, Bobotie, Boerewors, Yellow Rice, lots of spices which today I take for granted.  Melon especially watermelons you would buy off the side of the road, take them home and keep them in the fridge for 24 hours before using them.  Cape Town was also the place where I learnt about lots of other cultures, homeopathy and vegetarianism, sweetcorn fritters, green bean salad, yummy and garlic was added to cooking to ward off infections.

Looking back, coffee was for elevenses, and served with hot milk, not every day more of a treat, the kettle was always on for a cup of tea and drinking water came from the tap. We had three meals a day, breakfast, dinner and tea, supper was a luxury that didn't happen very often.  Now that we are retired, I can eat the same way with dinner being in the middle of the day, whether it was because I was brought up this way, or not, it does suit my overall health, it does keep my sugar levels stable and helps me to maintain my weight. The big difference is that being retired is that we eat when we need to, no longer do we have fixed meal times.

Take a look at the Eatwell Guide on the NHS website




There is no specific diet for Lymphoedema


Portion Control

It is so important to control what I eat, not only for my lymphoedema but for all the other niggles I have.  In the past I must have tried virtually every fad diet going. Portion control works for me and it is my personal choice. I lost four and half stone over four and half years, not only has this method helped me maintain my weight it has stopped the cycle of fluctuations in my weight. You only have to look at the poster below to see how plate sizes have changed between the 1950’s and now.  If I am on the go, I know that a portion fits into the palm of my hand.  In my younger days it was very difficult not to eat all that was on my plate as I had been brought up in a generation that food wasn't to be wasted at any cost.  At home it is never a problem because I am guided by the plate size I use, finding smaller dinner plates was difficult but I did finally find some.  Eating out can be a nightmare and we do this probably about twice a week.  Everything seems to come with chips, and this is where I will probably order a vegetarian meal because they tend to be smaller. My worst nightmare is being invited out for a meal where there is a set three course menu, which is way beyond my tummy's capabilities. Secondly when eating out meals that are booked for after 7 o'clock not only upset my tummy they send my sugar levels into the next stratosphere.  There is never a quick fix, there is no specific diet for lymphoedema, and it has taken a lifetime of learning, to find something that works for me.   I am lucky that I was taught the value of food and how it can have medicinal purposes, even if there is no scientific proof, people are entitled to their own beliefs and to make personal choices.  Like everything in life, you take the knowledge handed down, look to improve on it, be open to new ideas and discard what isn't good for you.  The human body is a marvellous creation, in my case it will tell me when something is wrong, it has taught me to trust my instincts which helps me make personal choices.

Portion Control British Heart Foundation





We know that if you are feeling thirsty you are already on your way to being dehydrated.  Our L-W-O members often tell me they do not like drinking water often admitting they don't drink enough.  So Pernille and I looked at the alternatives, we know caffeinated drinks are not good for lymphoedema and cause swelling to get worse.  Drinking water is essential for lymphoedema as the poster demonstrates.  I like my water ice cold, a throw back from the days of living in Cape Town. Friends of mine like to drink their water hot without anything being added like a tea bag or coffee. I can tell our members that coffee, carbonated drinks anything high in caffeine or alcohol is not good for the lymphatic system and increases swelling. The reply that often comes back is that they have drunk coffee all their lives and they are not stopping now.  My point is that as much as we try to inform our members, old habits take a lot of breaking especially for those newly diagnosed who can't always take in the lifestyle changes they may need to


British Nutrition Foundation


No Vitamins, Herbs or Food Supplements have been proven to work for reducing swelling for lymphoedema


Personal Choice

Our members over the last five years have just about discussed every diet, there is like 5.2 diet, Low Carb, Atkins, Paleo, Slimming World, Weight Watchers, Rosemary Conley, Sugar Free, The Rad diet and now the Keto diet is the one everyone is talking about.  The search to control and maintain their weight and heavy limbs goes beyond anything we can provide.  If you are a member of any of the other lymphoedema support groups either in the UK or globally you will see the same questions from group members.  We are not medical, we are not scientific, but members will always search for an answer that is right for them, we listen, and we can tell them why it is necessary for a healthy balanced diet and maintaining their weight, but they will make their own personal choices.

I get very frustrated when we get told this isn’t good for you and that doesn’t work.  In whose opinion?  Information coming from government is often confusing, one-week one food is good for you the next week it isn’t.  Even I can make a comprehensive argument why we should drink gin because it is high in juniper berries and all the beneficial health properties the berries have. Please remember alcohol is not good for lymphoedema.

We must not take away personal choice from our members, and what works for one does not necessarily work for someone else.  I personally would rather have a cup of peppermint tea for tummy problems than a handful of antacids and certainly wouldn’t be eating arrowroot and ginger biscuits.  If my kidneys feel off, I would rather drink Cranberry juice for a week that take tablets, unless I am deemed to have an infection.  For me a banana a day keeps my leg cramps away, if I stop eating a banana for a week then the leg cramps return.  Beetroot is high in fibre and half soluble and half insoluble.  Do I eat beetroot for those reasons?  No. I eat beetroot because I like it, sometimes putting it through the juicer and having a drink. For me crunchy vegetables are preferable to a bag of crisps. Chamomile tea going to bed is by far more relaxing for me than a glass of alcohol and I don’t wake with a muzzy head. These are my personal choices.

Although I am fortunate enough not to suffer with headaches there is one exception and that’s when I eat chocolate.  So, for me if I need to snack it is far better to reach for some fruit or nuts or seeds that not only fill me up quickly, are less addictive and I know they keep my sugar levels stable.

Celery, turmeric, curcumin, glucosamine, coconut oil, aloe vera either as a gel or drink are a few of the alternatives that get talked about regularly and there is nothing wrong with herbs and spices being used to flavour foods in cooking.   My personal belief is that we should get all the vitamins and minerals from the food we eat, eliminating the need to take them in tablet form.

Living with a long-term illness is tough but many of us know what foods and drink cause a reaction and make our condition worse, I can give out the facts, I can suggest you use common sense, but I cannot take away your personal choice.

Breaking the itch scratch cycle

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


Always do what it right for you

I can never quite work out if the itch/scratch cycle is solely down to my lymphoedema, the medication I must take or that I was born with very dry skin.  I know as a child I had eczema which would flare up from time to time but eventually seem to outgrow. I do know that the itching has got worse since my lymphoedema, but I also know some of my medication states clearly that it can cause hives and itching.  My guess would be a combination of both?

This week I ran a poll amongst L-W-O members and asked, "what time of day they found the most difficult"?

The Poll ran for 48 hours and 41 members took part


My urge to scratch is always in the evening, usually around my wrist area, very much on my affected side, but my feet can also cause problems.

I will always be eternally gratefully to my Aunt who when I was 10 gave me a jar of Pond’s and told me to moisturise every day, saying very firmly “don’t forget your neck”.  Moisturising was instilled in me from a very young age, and I have never had a problem with the routine of looking after my skin.  The older I get the more appreciative I am of this early advice.  My Aunt lived until she was 102.


Many of our members report itching, burning sensation on their skin and we know from experience that keeping our skin in good condition is essential for our overall well-being.  Although not for everyone I find body brushing does help, especially if my skin is flaky.  A gentle brush followed by holding my arm under a cold water tap really does work for me.  If the burning sensation gets too much, I use an ice pack. Then lots of moisturiser. 

With my feet I keep a pair of clean white cotton socks at hand then moisturise my feet and put the socks on as it holds the moisture in.  A glass of water helps at this stage, because I am moisturising from within and this does cool me down internally.  It won’t suit everyone, but it does work for me.

I would also suggest that mild, unscented soaps and conditions are preferable. Please remember that’s soaps can be very drying and again it is important to use something you like and works for you.

Finally nail care is essential, I keep my nails short, filed and try not to let them get too ragged so that if I do scratch before I realise what I am doing, then I don’t cause too much damage. At all costs avoid breaking the skin.

Lymphoedema & Self Care

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

Last Wednesday I teased on support group ‘Watch this space’

As you might guess I have an absolute passion for raising awareness and supporting those of us that live with lymphoedema.  It has been a steep learning curve and every day I learn something new from our members, followers and supporters.  I don’t always get things right and I have learnt that I can’t please everyone. 

My effort to Get Moving

My hubby bless him, bought me a Fitbit for Christmas to help me better manage my health.  This means I get nine reminders from 8 am – 5 pm to move around, not just be stuck in front of a screen, it reminds me to keep my water levels up, has a great feature to practice deep breathing which helps me relax.  Very good for my lymphoedema, but a struggle with my osteoarthritis trying to maintain a certain amount of steps. It has confirmed that I do only sleep on average six hours a night. It’s not perfect and not 100% accurate but as a guideline it has made a great difference to the way I look after myself. On our social media platforms we use the #getmoving.

Normally I get very bored with gadgets, but we are now mid-February and we are still connected.   What my Fitbit has also done, and I am thrilled about it has shown me how much my heart rate slows down when I am writing even when I am writing out of anger and frustration, it maintains a steady rate and my BPM is a lot lower than when I am doing routine household chores.  Which is why I am such an advocate in you having something you can do for yourself that, you enjoy, whether you have a hobby, knit, draw, paint do crafts, read a book it is all good for our physical well-being and our mental well-being. I have always found writing cathartic.

The time it takes

Running L-W-O could take up to 70 hours a week and I have now got this down to 30 hours a week.  While my phone for support group is on from 9 am – 10 pm every day, I have got so much better at not looking at my phone when I am out and about.   The laptop goes off at 2 pm so my writing and poster making has to be finished by then or left until another day.  As my journey has evolved several projects, I worked on in 2018 centred around self-care and I began to realise more than ever that on a personal level I also had a responsibility to myself to take care of me!  This is why you will often see across our social media the hashtag;

Self-care starts with you

More than ever I believe that we can do a lot for ourselves to improve our daily living.  It isn’t by any means easy and we all need support from each other and the wider lymphoedema community.   Groups like L-W-O are at ground level we continue to advocate for more knowledge, support, treatment and we want lymphoedema to be recognised.  This year we will be promoting Lymphoedema Awareness Week (LAW) in the UK.

Lymphoedema Awareness Week

3rd-9th March 2019


During my journey I have met some wonderful people often introducing them to lymphoedema for the first time. 

The community supporters I have met along the way has been truly amazing people who, often live with a long-term condition of their own, they understand what it was like to have a condition whether it be a physical or a mental health problem that nobody has heard of.   The daily challenge this presents is so underestimated.  In Coventry there are 99,000 people living with a long-term condition that we know of.  

Image provided by the National Lymphoedema Partnership (NLP)

I also began to realise how easy it was to incorporate self-care into our L-W-O journey.  From August last year more than ever I started to add visual postings with much more information on how the self-care tips I was learning could be used by all our members to help self-care their lymphoedema.  There are times in life we all need a little reminder and if it helps one person make a small lifestyle change then it is more than worth the effort.

To that end we celebrated self-care week in September 2018 and this year we will be celebrating self-care week 2019:

Image provided by:


Much of the work on Self-Care would not have been possible without the encouragement, help, support and patience that Grapevine Coventry & Warwickshire, Mel Smith, Naomi Brook, Feel Good Ambassadors and Collective leaders invested in me. Because of this I am thrilled to have been added to the Self-Care Champions wall on the self-care forum take a look at you will find me at the bottom of the page:


Cervical Cancer

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


Cervical Cancer Screening


I am one that does not need a lot of persuading on the matter of screening because my mammogram saved my life and caught my breast cancer at stage two.  This meant our amazing NHS moved swiftly to see that I was treated quickly and efficiently, and I am now eight years clear.

Approximately two years ago I attended a training event to become a Cancer Champion, the idea being that, those of us that attended would promote cancer screening programmes.   We would encourage our family, friends and anyone else we might engage in conversation to go for screening.  My understanding is, that those who attended the courses, especially the Health Care Professionals (HCP’s) from GP surgeries, becoming a Cancer Champion was successful.  However, for those of us who attended that were non-medical but have a great deal of interest in health-care there was no follow through and no support afterwards.  Because I do what I do as Founder of L-W-O for me it’s a no brainer and I will always attend any screening I am offered and I will happily promote the importance of screening across L-W-O platforms.

The 14/15 January 2019 I was invited by  to a Cervical Screen Event in Coventry and Nuneaton. The purpose of these meetings:

  • Share facts about cervical cancer
  • Explain the role of Cervical Screening in detecting cervical cancer and in saving lives
  • Findings of research: Why do some women not attend for screening?
  • Discuss how we might help in sharing information about the importance of screening with other women and their families

Coventry and Warwickshire have one of the lowest up takes for Cervical screening in the Country as the following chart shows:


The discussion then centred around why women are reluctant to go for cervical screening:

  • Assumption of low risk because of low number of sexual partners
  • Fear of cancer diagnosis and treatment
  • Feeling shame or embarrassment
  • Other priorities
  • BME women sometimes fear poor clinic hygiene will lead to infections

Discussing the HPV Vaccination (Human Papilloma Virus) that was introduced for girls in 2008 and is offered to all girls ages 12 – 13 years there are two injections, 6 months to two years apart.  I think it is better if I signpost you to the NHS website for further details:

The HPV vaccination for boys will be rolled out in 2020 for further details please go to the NHS website:

There are several reasons why women will not go for their smear tests they maybe body conscious, scared or feeling vulnerable and a feeling that they are not in control.

Therefore, I was thrilled to hear that many of the HCP’s present, where talking about the 'out of hours services' available to women across Coventry & Warwickshire, this included opening some surgeries seven days a week.  One surgery was more than happy to open at seven in the morning so that women who had made an appointment could attend before going to work.  It was felt that some women were happy to do this because they were freshly showered and dressed for the day.  However, all the HCP’s present stated that, when screening takes place, they are too busy doing the test to be concerned on how someone might look.  Reassurance here is key and if you are worried please speak to your HCP but don’t let it prevent you from having your smear test.

For further information check out Jo’s Trust their vision is  “A future where cervical cancer is a thing of the past”.


The two sessions I attended were informative and I was thrilled that L-W-O was invited to attend with our information stand.  I understand that these sessions are aimed at prevention which, I totally agree with.  However, I asked two years ago on the Cancer Champions course and I asked again this time when will we get sessions or training events on living with cancer or for dealing with the side effects of Medication or LYMPHOEDEMA?

All the information written in this blog provided from the organisations pictured above.  Information is written in good faith, thoughts and interpretations are the authors.


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.



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, and I received a lovely reply back.


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. 


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.


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



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.



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




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

Health Unlocked Forum statistics:

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

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, 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:


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'


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