THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
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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) May also include: • Body shape: • Tender/aching/painful legs • disproportionate lower/upper body • Cankels (cuffs at ankles) • mostly pear/apple shaped • Soft skin, often hypothermic (cooler) • changed at puberty/pregnancy/menopause • Upper arms (tuckshop lady arms) • Can’t lose weight off affected areas • Lymphoedema (legs & arms) • CVI (chronic venous insufficiency) • Bruise easily • Genetic history (most likely somewhere) • Skin appearance: • Hypermobility (60%) • mattress/orange peel/large dimples • Joint issues / painful knees • subcutaneous nodules (rice/peas/pebbles) • Migraines? • Abnormal gait Ref: Földi's Textbook of Lymphology: For Physicians and Lymphedema Therapists
CVI? CVI – chronic venous insufficiency • Valve issues • Leaking nutrients • Can be internal and not visible! Spider Veins Varicose veins
MH2 HYPERMOBILITY (60% LIPOEDEMA SUFFERERS - BELTRAN & HERBST 2017 – 4 PTS) King Cobra pose Copyright Helen Eason Physiotherapy
Slide 11 MH2 Mel Horton, 27/09/2020
WHAT STAGE? Some women progress to later stages quicker than others Some women never progress to stage 3 Some women develop lipolymphoedema while others don’t WE DON’T KNOW WHY!
WHAT CAUSES LIPOEDEMA? 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. Copyright Karen Herbst
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 https://insight.jci.org/articles/view/135109 generally.
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 Treatment Emotional support Nutrition Manage Pain & Exercise Improve 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 COMMENTS • 6 replies / 5 had issues • “I was a blimp” • Avg weight gain 20kg – some fat some • “There was nothing radiant about me” fluid • “I sloshed when I walked” • Generally - more kids, more weight gain • “My thighs got big” • Avg loss time 11 months ( 2 – 60 mths ) • 1 gestational diabetes
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 Guide https://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_B wE Karen Herbst
MANAGE PAIN & LYMPHATIC FLOW - #3 • Rest with legs up at the end of the day • Exercise • Wear compression (Bioflects) • Build muscle strength (quads) • Warm up AND down! • Get MLD • Start slowly and work upwards • Vibrate & Pump • Aquarobics • Medications • 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 • 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 Bi-lateral pants lite $1165 • Start low pressure – up by 10s • Start short 10-15mins – up to 60mins • WEAR Bioflects Optimal pump $1600 Bi-lateral adjustable pants $1640
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 Keji Oak Family Practice Shop 6-7 5 Pipit Close Huntingdale WA 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! Dr Lekich recommends: • Laser / Sclerotherpy (glue) only • Dr Matar – The Vein Clinic Subiaco • 5 day recovery • Imaging and vein work on site • 6 weeks for new vessel growth • Need GP referral for medicare rebate • Done under twilight • Private clinic • PRIOR to Liposuction • Consider costs • Imaging $216 • Consult $ 225 • Per Leg costs $1000+ out of pocket - Medicare contributes $1615
VEIN WORK – WILL INCREASE INFLAMMATION TEMPORARILY
CONSIDER LIPOSUCTION Liposuction 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 removal Renuvion 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: With (or without) Skin Reduction: • Dr Lekich (Gold Coast Qld) • Dr Adrian Brooks • $13,500 / thigh/abs/buttocks • Costs $10,000 for both thighs • Dr Lansa – Perth clinic Dr Wong • + Overnight hospital • $3,500/area - Thighs $7000 • + Anaesthetist • Hoping to open later 2021 in Perth • Skin reduction enables Medicare rebate for hospital & anaesthetic • Dr Argie – Perth/Mandurah • Dr Mark Hanikeri • $5,500/section (5/6 litres) • Costs $4,500/hour all inclusive • Dr Murray – Perth • As above • $3,300/area + theatre • Does renuvion skin tightening?
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 INFORMATION Good Articles: • Wounds UK. Best Practice Guidelines: The Management of Lipoedma https://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 disorders https://insight.jci.org/articles/view/135109 • Lipoedema Australia Information leaflet for medical professionals https://static1.squarespace.com/static/58999c876a496356e7f2191e/t/597173debe6594f000b680b4/1500607461403/MP+brochure+%281%29.pdf • New Insights on Lipedema: The Enigmatic Fat Disease https://www.lipedema.net/new-insights-on-lipedema-the-enigmatic-fat-disease.html
THANK YOU FOR LISTENING! ANY QUESTIONS?
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