THE LYMPHATIC SYSTEM OF THE HUMAN BODY

We love your lymphatics

We want you to love them too!

WHAT WE’RE COVERING TODAY

• Leaders in the field of lipoedema!

• Do I really have Lipoedema?

• What causes Lipoedema?

• How is it treated?• Conservative Management

• Intervention

• Where can I get more information?

LEADERS IN THE FIELD- WITH GRATEFUL THANKS!

• Dr Stanley Rockson (Researcher Stamford University - USA)

• Dr Matthew Carmody (MD Harvard Medical School USA)

• Dr Karen Herbst (Endocrinologist & researcher Arizona College Hospital - USA)

• Catherine A Seo (PHD Phycologist & Lipoedema sufferer – The Lipoedema Project)

• Prof. Neil Pillar (Flinders University – Mr Lymphoedema Australia)

• Helen Eason (Lymphoedema Physio & PHD candidate Sydney University)

• Jen Sanderson (Lymphoedema Physio & PHD cand. – clinical advisor Medirent Australia)

• Dr Chris Lekich (Phlebologist, Liposuction – Brisbane)

• Dr Adrian Brooks (Surgeon, plastic & reconstruction - hands, burns, body)

DO I HAVE LIPOEDEMA?- LIPOEDEMA HAS SPECIFIC SYMPTOMS

• Female (very rarely male as oestrogen based)

• Body shape: • disproportionate lower/upper body

• mostly pear/apple shaped

• changed at puberty/pregnancy/menopause

• Can’t lose weight off affected areas

• CVI (chronic venous insufficiency)• Bruise easily

• Skin appearance:• mattress/orange peel/large dimples

• subcutaneous nodules (rice/peas/pebbles)

• Abnormal gait

May also include:

• Tender/aching/painful legs

• Cankels (cuffs at ankles)

• Soft skin, often hypothermic (cooler)

• Upper arms (tuckshop lady arms)

• Lymphoedema (legs & arms)

• Genetic history (most likely somewhere)

• Hypermobility (60%)

• Joint issues / painful knees

• Migraines?

Ref: Földi's Textbook of Lymphology: For Physicians and Lymphedema Therapists

BODY SHAPE? – DISPROPORTIONATE DISTRIBUTION

Copyright Helen Eason Physiotherapy

CVI?

Spider Veins Varicose veins

CVI – chronic venous insufficiency• Valve issues• Leaking nutrients• Can be internal and not visible!

SKIN APPEARANCE

Mattressing fat VS Cellulite

* Will always have nodules

GAIT

Copyright Helen Eason Physiotherapy

CANKELS & ARMS

GENETIC HISTORY

• Autosomal Dominant

• Can come down through male side of the family

HYPERMOBILITY (60% LIPOEDEMA SUFFERERS - BELTRAN & HERBST 2017 – 4 PTS)

Copyright Helen Eason PhysiotherapyKing Cobra pose

MH2

Slide 11

MH2 Mel Horton, 27/09/2020

WHAT STAGE?

Some women progress to later stages quicker than othersSome women never progress to stage 3Some women develop lipolymphoedema while others don’t

WE DON’T KNOW WHY!

WHAT CAUSES LIPOEDEMA?

Copyright Karen Herbst

VEGF –Vascular Endothelial Growth Factor

Macrophages – part of the body immunity system (i.e. part the lymphatic system) & are the main source of the cytokine immune response.

ROLE OF THE LYMPHATIC SYSTEM

• Sewerage System of the body

• Fluids - uptake and clearance that can’t get back into the blood vessels

• Absorption of fats (long chain fatty acids)

• Maintains blood volume

• Immune response – responsible for Lymphocytes(B & T cells), antibodies, Stop & Memory cells, and maturing Macrophages.

WASTE MAINTENANCE

• Collects & drains: 2-4L Lymph per day.

• 100mls lymph drain from each arm daily= about a ½ cup of tea.

• 200-300mls drain from each leg daily= about 1½ cups of tea.

• Works at about 20% of capacity.

Body Anatomy

THE VENOUS BIT - CVI

THE VENOUS BIT –VEGF

Dr Chris Lekich

THE INFLAMMATORY BIT – MACROPHAGES & GAGS

HISTOLOGY – FIBROTIC CELL ENCASING

THE LOOSE CONNECTIVE TISSUE LAYER (LCT)- THE INTERSTITIAL MATRIX

WHAT IT ACTUALLY LOOKS LIKE

Normal fat is feel firm to the touch, whereas lipoedema fat is soft and squidgy – due to its high fluid content.

THE PF4 MARKER - LATEST RESEARCH BY DR ROCKSON– AMINO ACID

– MEASURE OF MACROPHAGES

• Proves Lipoedema is a Lymphatic disorder

• If you don’t have secondary lymphoedema or phlepolymphoedema and you have a high PF4% you likely have Lipoedema (assuming other symptoms & no other causes)

• Lipoedema recognised in USA and Europe but not yet in Australia – this research should assist recognition (but don’t hold your breath!)

• Testing at research stage and not yet available generally.https://insight.jci.org/articles/view/135109

A NEW DRUG - RZL-012

• Raziel Therapeutics – Israel

• Kills cells so lysosomes work

• Currently under trials in USA

• Conducted by Dr Karen Herbst

• Good for Dercums/Lipomas

• May be tricky for smaller Lipoedema nodules

• Phase III trials 2022

• https://medium.com/@thecarolnogueira/a-new-drug-could-treat-dercums-disease-and-lipedema-2fedfcb5c3be

HOW DO WE TREAT LIPOEDEMA?

Conservative TreatmentEmotional supportNutritionManage Pain & ExerciseImprove lymphatic flow

Intervention Treatment Bariatric Vein work Liposuction

https://www.fatdisorders.org/treatments-summary

WHY SHOULD I DO ANY OF THIS?

• Likely continuous increase in size

• Brings additional risks:• Diabetes

• Joint issues

• Heart issues

• Pregnancy issues

• Lipoedema is a disease – think of it like diabetes – it requires daily management

• Make a positive decision to adjust your lifestyle – small steps

PREGNANCY SURVEY RESULTS

REPLIES

• 6 replies / 5 had issues

• Avg weight gain 20kg – some fat some fluid

• Generally - more kids, more weight gain

• Avg loss time 11 months ( 2 – 60 mths )

• 1 gestational diabetes

COMMENTS

• “I was a blimp”

• “There was nothing radiant about me”

• “I sloshed when I walked”

• “My thighs got big”

EMOTIONAL SUPPORT - #1

• Firstly - its NOT YOUR FAULT!!

• Come to coffee mornings to meet other sufferers

• Educate spouses/family/friends so they can support you

• Educate your GP/surgeons/health workers/people in the street!

• Join patient groups/facebook

• Consider counselling

• LOVE YOURESELF

THIS GUYS LOVES HIMSELF

NUTRITION - #2

• RAD diet

• Keto diet/Keto adjusted diet

• Paleo diet

• Anti-inflammatory diets

• Avoid salt

• Avoid simple carbohydrates

• Take supplements (with GP approval)• Vit C/Vit D/Diosmin (flavonoid)• Reed RK, Berg A Gjerde EA, Rubin K, Nemin Nephrol

2001;21:222-30

• Lympoedema & Lipoedema Nutrition Guidehttps://www.angusrobertson.com.au/books/lymphedema-and-lipedema-nutrition-guide-mandy-kenyon-emily-iker-linda-anne-kahn-dorothy-d-sears-chuck-ehrlich-karen-louise-herbst-elizabeth-jane-mcmahon/p/9780976480686?zsrc=dsa-feed&gclid=EAIaIQobChMI0pblr4aJ7AIV1KuWCh3NSgHAEAAYASAAEgI0tPD_BwE Karen Herbst

MANAGE PAIN & LYMPHATIC FLOW - #3

• Rest with legs up at the end of the day

• Wear compression (Bioflects)

• Get MLD

• Vibrate & Pump

• Medications

• Exercise• Build muscle strength (quads)• Warm up AND down!• Start slowly and work upwards• Aquarobics• Walking• Lymphatic yoga• Rebounding• Cycling• Pilates

VIBRATE – GET A WOBBLE GOING

• Loosens LCT

• Separates Lipids

• Frees up fluid ready for transport

• Start slow, 5-10mins

• Work up to 20-30 mins

• Follow with pump

• What’s the best one to buy?https://www.biohackerslab.com/reviews/best‐whole‐body‐vibration‐machine/

THEN PUMP- LYMPHAPRESS OPTIMAL WITH BI-LAT PANTS

Optimal pump $1600

Bi-lateral pants lite $1165

Bi-lateral adjustable pants $1640

• Moves fluid• Stretches pre-adipocytes (inhibits full

adipocyte growth)*• Body spends energy on ECM

remodelling/healing, not fat storage** Mariman & Wang. Cell Mol. Life Sci. (2010) 67:1277-1292

• Start low pressure – up by 10s• Start short 10-15mins – up to 60mins• WEAR Bioflects

ABDOMINAL POSITION IMPORTANT- WEAR BIOFLECTS/GARMENT/MOBIDERM- ADDED BENEFIT OF FIBROSIS MANAGEMENT

INTERVENTION - HOW DO I START

• Formal Diagnosis

• Lymphoedema Physio/OT/Nurse

• RMT referral & GP

• See Dr KejiOak Family PracticeShop 6-75 Pipit CloseHuntingdaleWA 6110

Tel: 9490 3113

CONSIDER BARIATRIC SURGERY

• Gastric band/sleeve

• Lose 5 BMI points to qualify for Medicare rebate ($3K?)

• Need proof if can’t – BIS testing can help

CONSIDER VEIN WORK

• NO stripping or cut & strip!

• Laser / Sclerotherpy (glue) only

• 5 day recovery

• 6 weeks for new vessel growth

• Done under twilight

• PRIOR to Liposuction

Dr Lekich recommends:

• Dr Matar – The Vein Clinic Subiaco

• Imaging and vein work on site

• Need GP referral for medicare rebate

• Private clinic

• Consider costs

• Imaging $216

• Consult $ 225

• Per Leg costs $1000+ out of pocket- Medicare contributes $1615

VEIN WORK – WILL INCREASE INFLAMMATION TEMPORARILY

CONSIDER LIPOSUCTIONLiposuction only

• Tuminescent only (not laser/ultrasound)

• Water based with adrenolin

• Carried out under twilight

• Quick recovery 2-3 weeks

• Wear garments & MLD/pump

• May need later excess skin removalRenuvion skin tightening?

With Skin Reduction

• Water based liposuction

• With excess skin removal

• General anaesthetic

• Longer recovery 4-6 weeks

• Requires scrupulous cleanliness

• Wear garments & MLD/Pump

POSSIBLE SURGEONS

Liposuction only:

• Dr Lekich (Gold Coast Qld)• $13,500 / thigh/abs/buttocks

• Dr Lansa – Perth clinic Dr Wong• $3,500/area - Thighs $7000

• Hoping to open later 2021 in Perth

• Dr Argie – Perth/Mandurah• $5,500/section (5/6 litres)

• Dr Murray – Perth• $3,300/area + theatre

• Does renuvion skin tightening?

With (or without) Skin Reduction:

• Dr Adrian Brooks • Costs $10,000 for both thighs

• + Overnight hospital

• + Anaesthetist

• Skin reduction enables Medicare rebate for hospital & anaesthetic

• Dr Mark Hanikeri• Costs $4,500/hour all inclusive

• As above

VALERIE’S EXPERIENCE

• Lipo with Dr Lekich

• Had 3 x ops on legs

• Nicer smaller but not beautiful!

• Skin - calves smooth, thighs saggy

• Ongoing Keto & fasting for thighs

• Gave up on flat knits -> bioflects

• Cost $11.5K? (+ travel & accom)

• THANK YOU VALERIE!

WHERE TO GET MORE INFO

• Mandurah Oedema Website https://mandurahoedema.com.au/lipoedema

• Lipoedema Australia https://www.lipoedemaaustralia.com.au/

• Victoria Health https://www.betterhealth.vic.gov.au/health/ConditionsAndTreatments/Lipoedema

• The Lipedema Foundation https://www.lipedema.org/

• The Lipedema Project - The disease they call fat https://lipedemaproject.org/ebook/

• Victoria Health https://www.betterhealth.vic.gov.au/health/ConditionsAndTreatments/Lipoedema

• LE&RN Lymphatic Education & Research Network https://lymphaticnetwork.org/

• Fat Disorders Organisation https://Fatdisorders.org/lipoedema

• Lipoedema Western Australia Facebook page run by Jennifer Free

WHERE TO GET MORE INFORMATIONGood Articles:

• Wounds UK. Best Practice Guidelines: The Management of Lipoedmahttps://www.wounds-uk.com/resources/details/best-practice-guidelines-management-lipoedema

• Understanding Fibrosis in Lipedema: Inflamed Subcutaneous Adipose Tissue (SAT), and nodules https://lymphaticnetwork.org/news-events/understanding-fibrosis-in-lipedema-inflamed-subcutaneous-adipose-tissue-sat#:~:text=As%20lipedema%20progresses%2C%20chronic%20inflammation,or%20lymphedema%20secondary%20to%20lipedema.

• Karen Herbst Q&A with Carol Nogueira https://medium.com/@thecarolnogueira/karen-herbst-q-a-eee41c714992

• Dr Stanley Rockson et al Platelet factor 4 biomarker for lymphatic-promoted disordershttps://insight.jci.org/articles/view/135109

• Lipoedema Australia Information leaflet for medical professionalshttps://static1.squarespace.com/static/58999c876a496356e7f2191e/t/597173debe6594f000b680b4/1500607461403/MP+brochure+%281%29.pdf

• New Insights on Lipedema: The Enigmatic Fat Diseasehttps://www.lipedema.net/new-insights-on-lipedema-the-enigmatic-fat-disease.html

THANK YOU FOR LISTENING!

ANY QUESTIONS?