News

2021 LNNI Upper Limb ‘at risk’ patient advice leaflet

LNNI is pleased to release the new 2021 ‘at risk’ advice leaflet for those who have had breast cancer treatments and who are at risk of developing lymphoedema of the arm, chest wall or breast.

This has been developed in conjunction with a service user group, and local BCNs and oncology physiotherapists.

Download here: FINAL -MAY 21 - 9093_Lymphoedema Arm at risk.pdf

2022 Lymphaletics - Save a date!

The Children’s Lymphoedema Specialist Interest Group (CLSIG) of the British Lymphology Society (BLS) is very happy to announce that the next children and young people’s Lymphaletics will happen on Saturday 17th September 2022.

This event is for children (and their families/carers) who have been diagnosed with lymphoedema. The day is supported financially by many manufacturers, and aims to provide learning and support opportunities alongside many varied fun activities.

It is a chance to build new relationships with other families and join a virtual support network too.

Launch of new self-assessment tools for male or female genital lymphoedema – useful for all Pelvic Health staff to have as a screening tool and referral aid

The British Lymphology Society ‘Find 3’ challenge for 2021 Lymphoedema Awareness Week!

Your lymphatic system needs movement, stretching and activity to remove the fluid and cells from your tissues that the body doesn't need. This doesn't need to be vigorous exercise. Indeed, the best way to help your lymphatic system to do its job is to have short, regular periods of activity that can easily be built into your daily life. That's why we are asking you to 'Find 3 Minutes' at various times throughout the day when you can do something to wake up your lymphatic system and help it to get your lymph moving. Even if your mobility is limited or need help to move any part of your body there are things you can do. The link to the website is Find 3 Challenge (thebls.com)

So, when could you Find 3 to boost your lymphatic system?

Anytime you are waiting for something to happen you could be giving your lymphatic system a boost, e.g. waiting….

  • for the kettle to boil
  • on hold on a telephone call
  • in your car for lights to change
  • for a large document or website to download on your PC
  • in a queue
  • during the adverts on TV programmes
  • for the microwave to ping
  • for the toast to ‘pop’up’

Try to Make 3 at other times to relieve tension and stiffness, as well as boosting your circulation and your lymphatic system. If you spend a lot of time in one position, such as on a computer, tablet or phone, or just watching TV, make set times to get up and move around a bit or stretch your muscles, ideally every hour. Set yourself an alarm as a reminder or put a sticky note on your fridge door encouraging you to have a stretch every time you open the door to take something out.

Instead of just waiting, here are a few things you could do - Caution – Never force a stretch beyond what is comfortable for you

Heel raises

  • From standing, slowly raise yourself on to your tiptoes and then lower yourself back down. Repeat!
  • Variation: A seated option will get your calf muscle pump going too. While seated, sit up straight with your feet flat on the floor. Raise your knees so that your feet are on their tiptoes and lower.

Calf stretches

  • From a seated position: Straighten one or both legs out in front of you. Pull your toes up towards you so that you feel a stretch in the back of your legs. Hold for a few seconds and release. Repeat this a few times.
  • From standing: Support yourself if needed by holding on to a worktop, desk or chair. Stretch one leg slightly forwards and pull your toes up towards your leg. Your heel may be on the floor for support. Hold the stretch for a few seconds, release by pointing your toe. Repeat this stretch and relax a few times. Then do the same on the other leg.

Knee lifts

  • Whether sitting or standing, lift one knee up as high as you can, then rest it down. Do the same with the other knee. Repeat alternate knee lifts a few times.

Deep breathing

  • Deep breathing helps muscles move fluid through the lymphatic system, clearing lots of toxins. Slow deep breaths stretch the chest muscles and can be done anywhere. It is also good to do these with some slow stretches such as those below.

Neck stretches

  • Breathe in slowly as you tilt your head slightly back to look towards the ceiling. Breathe out slowly and you bend your chin towards your chest. Repeat a few times.
  • Look straight ahead. Keeping your shoulders facing forwards, turn your head slowly to one side, as far as is comfortable, return to the front, then turn to the other side, slowly. Repeat a few times.

Arm stretches

  • Stretch one arm up as straight and high as you can, hold for a couple of seconds then lower your arm. Do the same with the other arm. Repeat a few times.
  • Take one arm across your body and stretch it as far as you can to the other side. You can use the other arm for support if you need to. Release it, then stretch the other arm across to the other side. Repeat both stretches a few times.
  • Clasp your hands together in front and stretch out as far as you can. Hold for a few seconds, release and repeat a few times.

Shoulder rotations

  • Place your hands on your upper chest and lift up your elbows so they stick out to the side. Move your elbows in big circles, moving backwards a few times. Then change direction and rotate them forwards.
  • Shrug your shoulders up towards your ears, push them back (stretching your chest muscles), pull them down, push them forwards to stretch your back muscles. Repeat and do a few rotations in one direction, then the other. This is really good for relieving tension in your shoulder and neck muscles.

Coronavirus Vaccine Advice

Coronavirus Vaccine Advice: February 2021

Please advise anyone who has lymphoedema that lymph node swelling can be a side effect of any vaccine but is a known side effect of both the Moderna and Pfizer COVID-19 vaccines. However, we strongly urge that they accept whichever vaccine is offered, providing they have no contraindications.

As per previous advice from Prof. Peter Mortimer, anyone with lymphoedema of the arm is advised to get the vaccine in the opposite arm or thigh.

This advice also applies to those who do not have lymphoedema but who have been treated for breast cancer. They should request the vaccine in the opposite arm from their breast cancer treatment. If they have had lymph nodes removed or treated on both sides, the injection should be in the thigh or buttocks.

The Pfizer and Moderna COVID-19 vaccines documents confirm it may be given in the thigh. This is stated on the vaccine documents in a footnote.

Also see: BLS Covid vaccination Consensus document for those with lymphoedema or at risk of developing lymphoedema

Thank you,
BLS Administrator.

 

Lymphoedema Support Network (LSN) letter on COVID-19 vaccination and impact for those with lymphoedema

The Lymphoedema Support Network (LSN) have published the following letter from their patron, Prof Peter Mortimer, regarding the COVID-19 vaccination and impact for those with lymphoedema associated with a previous breast cancer.

See attached.

2020 BLS Conference sees launch of new resources

LNNI is happy to announce the launch of the following at the 2020 BLS Conference:

  • 2020 Chronic Oedema best practice document
  • 2020 BLS Red Legs Pathway
  • 2020 St Georges’ updated primary lymphoedema diagnosis pathway
  • 2020 European Lipoedema Consensus document

 

Legs Matter Week 12-16th October 2020 - legsmatter.org/legs-matter-week/

Lipoedema UK AGM – 24th September 2020 2.00pm

Dear Members,

As the year has flown by, it is time for another AGM. Whilst we are sorry not to be able to meet in person this year, we hope you’ll join us online to catch up on what we have been doing. 

We love to know how you have been coping during Covid, your views and input about what we've been doing on your behalf and we are always keen to chat to people who would like to volunteer or get more involved, 

However there are a few formal things we need to do, so the formal agenda will be:
1 - Approve minutes from last year (will send out to attendees by email)

2 - Elect the Trustees: - Sharie Fetzer (Chair), Kate Forster (Treasurer & Secretary), Suzanne Evans and Lucinda Evans are all willing to stand again.

3 - Update from us on what we've been doing this year, including our Trustees Annual Report & Accounts (and what our current plans and priorities are as we know it's hard to just talk about last year!)

If there is anything you want to raise for the agenda please email Joella@lipoedema.co.uk by Sunday 20th September.

Like many other charities, we have seen significant impact from the Covid-19 pandemic, including reduced opportunities for people to fundraise for us.  Although there are less events where healthcare professionals are gathering in person, we are continuing to work on raising awareness of lipoedema and continue to need funds. 

Please remember your membership subscription helps fund our activities, from our surveys, working with healthcare professionals (like the Royal College of GPs training module which has been free to access for much of the summer this year) to creating new materials for raising awareness of lipoedema, launching our new online Members Health & Wellbeing Community and much more. 

Please also spread the word about membership and our resources to both healthcare professionals and people with lipoedema.  The stronger our membership, the stronger our voice.

Together we can beat Lipoedema!

We really look forward to you joining us virtually on Thursday 24th September and thank you for your membership and support. 

Click HERE to attend Lip UK AGM 

Sharie
Kate
Lucinda
Suzanne
Lipoedema UK Trustees

Biomarker for lipoedema

Dr. Stanely Rockson, a foremost cardiologist, a champion for lymphatic disorders and researcher has published new research that identifies the first biomarker for lipoedema - one that links lipoedema to the other lymphatic diseases, including lymphedema

This means there is now a diagnostic test that can be performed for lipoedema.

Platelet factor 4 is a biomarker for lymphatic-promoted disorders.

Wanshu Ma, Hyea Jin Gil, Noelia Escobedo,Alberto Benito-Martín, Pilar Ximénez-Embún, Javier Muñoz, Héctor Peinado, Stanley G. Rockson and Guillermo Oliver

First published June 11, 2020 https://insight.jci.org/articles/view/135109

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