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  • Ehlers-Danlos, Exercise &

    Rehabilitation

    Mark E. Lavallee, M.D, C.S.C.S, F.A.C.S.M. Director, York Hospital Sports Medicine Fellowship

    Past Chair, EDNF, Professional Advisory Council

    Asst Clin.Professor, Penn State Univ., College of Medicine

    Adjunct Clin. Professor, Drexel University, School of Medicine

    Chairman, USA Weightlifting, Sports Medicine Society

    Team Physician, Gettysburg College

    York, Pennsylvania

    EDNF National Conference August 15th, 2015

  • Disclosures

    No conflicts of interests

    All patients have given permission for their images/stories to be used in this talk.

  • Not Weightlifting Injuries

  • Not Football Injuries

  • Not all hyperflexible athletes have a

    connective tissue disorder!

    Not all patients with connective tissue

    disorders are pathological flexible!!

  • Do EDS Patients Exercise?

    1440 questionaires

    205 responses

    Response rate 13.8%

    196 questionaires were included

    Respondants: 160 female

    38 male

    Lavallee ME, Johnson P, EDNF, vol 2,

    2000.

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    Ehlers Danlos Syndrome Activity Questionnaire Please fill out this form for each family member who has EDS BASIC INFORMATION Age in years: __________ Gender: Female \ Male

    State of residence?____________________________

    Type of EDS? Classical Hypermobile Vascular Other Unknown

    (Type I & II) (Type III) (Type IV) (I dont know what type)

    What age were you diagnosed with EDS (in years)?____________________ ACTIVITY INFORMATION Amount of exercise? None 1/year

    1/month couple times /month couple times /week daily

    Type of exercise?__________________________________ How long exercising? 5 minutes 10 min 15 min

    30 min 45 min > one hour other_______

    Highest level of education? High School College Graduate Doctoral other______________

    Did/Do you participate in sports / athletics in high school, college, professional, recreational or other? Yes / No

    If Yes What sports? _________________________________________ Position played?_______________________________________ Length of participation?________________________________ Have you every had an injury playing sports? Yes / No If Yes Type of injury?_______________________________________ Did you require surgery because of the injury? Yes / No DISABILITY INFORMATION Are you employed? Yes / No If yes, Occupation?__________________________________ Do you require special accommodations at work? Yes / No If No, Do you consider yourself disabled? Yes / No What is your current perceived level of disability? Scale 1 10 (1 none, 10 need total

    help) 1 2 3 4 5 6 7 8 9 10 None some help needed

    totally dependent on help Are you receiving financial assistance? (i.e. disability, SSI, Social Security, etc.)

    Yes / No Do you require assistance? wheelchair \ crutches \ scooter \ braces \ other

    ____________________________ Number of major surgeries youve had? none 1 2 3 4 5 6 7 8

    9 10 or greater OTHER INFORMATION Have you been diagnosed with any other associated medical condition (listed below)? Endometriosis Fibromyalgia Chronic Fatigue Syndrome Dysparunia

    Asthma Amenorrhea Osteoporosis Problems with wound healing

    Fibrocystic Breast Disease Do you take supplements? Glucosamine \ Chondrotin \ Vitamin C \ Creatine \

    other_______________________ Do you seek alternative forms of medical therapy? Yes \ No If yes: Massage \ Chiropractic \ Osteopathic (D.O.) \

    Homeopathy \ Acupuncture \ other____________________ Please mail or fax by March 15, 2000 to:

    Name & Address (optional) Mark E. Lavallee, M.D. Director, Sports Medicine, Memorial FP Residency Sports Medicine Institute 111 W. Jefferson, Suite 100 South Bend, IN 46601 Tel. No. 219-289-4SMI Fax No. 219-239-6461

  • Type of Respondents

    22 (11.6%) Unknown

    14 (7.1%) Vascular

    50 (25.5%) Classical

    103(52.6%)Hypermobile

    Lavallee ME, Johnson P, EDNF, vol 2, 2000.

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  • How Active are EDS patients?

    Age Range: 5-75y.o.

    17% (34/196) Swam in:

    HS, College, or Receationally

    26.5% (48/181) Exercised Daily

    43.7% (79/181) Exercised 2-4x/wk

    16.6% (30/181) Did no exercise

    Lavallee ME, Johnson P, EDNF, vol 2, 2000.

  • What factors determine flexibility?

    Genetics

    Stretching

    Muscular Mass

    Age

    COLLAGEN!!

    USAW Pan Am Team July 2015, Toronto, CAN

  • USOTC Colorado Springs, CO -- 130 kg (286 lbs) deadlift

  • Strength Training

    DO Core strength

    Daily exercise

    Body weight

    Resistance Bands

    Dumbells/Barbells

    Machines

    DONT Cross-fit

    Olympic Lifts

    Kendrick Farris at 2011 Pan Am Games before 2012 Summer Olympic (London)

    Bronze Medalist: Chad Vaughn 2011 77kg BW 176 C&J

    Kendrick at 2015 Pan Am Games, GOLD Medal

  • Cardio Training

    DO

    Walk (10,000)

    Swimming

    Elliptical/Stepper

    Treadmill-incline

    Stationary bike

    Ergometer

    DONT

    Distance running

    4.4 mile Chesapeake Swim

  • Core strength/ Flexibility/Balance

    DO Thera-Ball

    Yoga

    Tai Chi

    FMS

    Ballroom Dance

    TRX

    DONT Competitive Cheer /

    Gymnastic

    2014 World University Team USA in Chang Mai with 1st and 2nd place team trophies!

  • Just Do it!

    Do not feel sorry for yourself!!

    Or I will introduce you to

    US Veteran

    Baby with Retinolastoma

    GET OFF YOUR NARCOTICS!!

  • Just Do it!

    Exercise EVERY day!! UNLESS Temp > 101

    Having surgery that day

    Laugh EVERY Day

    Help someone less fortunate than you weekly

  • Just Read this Book!

    You will learn to appreciate:

    Your pain

    What generations before us had to endure!

    Set GOALS: Short-term (1-3 months)

    Long-term (1-3 years)

  • Case #1: Hong Kong Phooey

    34yo Martial Artist

    World Champion

    Presents w/

    Multiple joint complaints

    Joint Pain

    multiple joint laxity/dislocations

    loose skin

  • History

    Family History

    Mom some loose joints

    Maternal Aunt loose jointed

    Athletic History (currently, retired)

    7 State Titles

    3 National Titles

    1 World Championship, Gold Medal

    Martial Arts Hall-of-Fame inductee

    2000 Competitor of the Year.

  • Case 2: Stretch Armstrong

    15y.o HS Wrestler

    Presented w/

    R shoulder dislocation (x5)

    L shoulder pain

    Exam:

    Muscular, strong

    - Notable laxity when relaxed

  • Exam

    Face Skin:

    No scars

    Hyperextensible

    Hands:

    Hypermobile at:

    MCP

    Thumb

    Shoulders:

    Auto-Sublux

    Meet 9/9 Carter-Wilkerson Criteria

  • Case 3: Champion Swimmer

    17y.o. HS varsity swimmer

    Freestyle/Butterfly

    Swims 15,000m/day

    Gone to State championship last 2 years.

    c/o b/l shoulder pain

    Skin: hyperextensible, soft

  • Exam

    GEN: Ht 61 Wt 185 Ht:Armspan

  • Case 4: Recreational Cyclist

    28y.o. cyclist who fell & struck his left chest and abdomen.

    He sustained:

    Large left flank hematoma

    Left A/C separation

    Left Chest wall contusion

    Initial eval. was in ER

  • Tests

    CXR: Aortic Aneursym?

    ECHO: Large aortic arch

    dilation

    nl EF

    min MVP

    no MR

    Biopsy: (+) COL3A1 gene

    Diagnosis: EDS Vascular type

  • In Conclusion

  • Recommendations

    Consider Physical Therapy:

    Strengthening the kinetic chain

    Proprioceptive re-training

    FMS training

    Prevent injury:

    Avoid contact, collision sports

    Avoid high dynamic sports

  • Recommendations

    Encourage activity: Low static, Low to Mild

    dynamic

    May recommend sports like biking, swimming,weight-training, golf..

    Patients often excel at certain sports due togenetic advantage b/c of flexibility.

    Mild Strength training has show benefits in joint stabilization

  • Recommendations

    Cardiovascular Screening

    ALL patients should get an initial ECHOCARDIOGRAM & AORTIC ULTRASOUND

    Every 3-5 years for average patient

    Every year for those with

    Aortic Dilatation

    Severe valvular disease

    Severe HTN

    Highly Dynamic sports

  • Recommendations

    Wound closure issues

    Dermabond /steristrips better than sutures

    Reproductive concerns

    Pregnancy

    Autosomal Dominant

    Provide psychological support

    Surgery as last resort.

  • Final thoughts

    Keep EDS in differential diagnosis of the Hyperflexible Athlete.

    Still as of 2014, diagnosis made by history and a thor

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