THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!

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THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
THE LYMPHATIC SYSTEM OF THE HUMAN BODY

           We love your lymphatics

         We want you to love them too!
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?
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
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)
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
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
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
BODY SHAPE?
    – DISPROPORTIONATE DISTRIBUTION

                                      Copyright Helen Eason Physiotherapy
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
CVI?

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

Spider Veins                                  Varicose veins
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
SKIN APPEARANCE
  Mattressing fat              VS   Cellulite

  * Will always have nodules
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
GAIT

       Copyright Helen Eason Physiotherapy
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
CANKELS & ARMS
THE LYMPHATIC SYSTEM OF THE HUMAN BODY - We love your lymphatics We want you to love them too!
GENETIC HISTORY

                  • Autosomal Dominant

                  • Can come down through
                    male side of the family
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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