Testimonials

Share Your Testimonial

Your Name (required)

Your Email (required)

Your Location (required)

Your Testimonial (required)

What a great job you are doing.
I suddenly realised that I no longer seem to be receiving emails for your webinars. Please could you reinstate me?

- Enid from Florida

This is all so helpful, thank you so much!  I just got diagnosed so it’s incredibly helpful to have all this support and information available.

- Jackie from Chicago

Thank you a million times for all you do and the wonderful work and resources you provide. As an EDS patient I am so grateful. This organization is the best one for EDS patients.

- Michelle from Kentucky

Thank you so much for the effort, dedication and sacrifice that you and your daughter have made for so many people around the world including those living in the forgotten parts of the world like us.

- Magan – Somalia

Thank you so very much for providing me with all of these resources…I should have reached out for help such a long time ago. I look forward to looking at all of them and attending meetings in the future.

- Katharine from Pittsburgh

Thank you for sharing your wife’s story on EDS….  an amazing soul to live through so much pain and have everyone undermine her due to their ignorance …  I could relate to her story…  I was diagnosed with Fibromyalgia in 2008 and just found out it is actually EDS.

- Joanne in Ontario

First of all I would like to say thank you very much for your unwavering support of EDS Wisconsin. I am so thankful that the EDS community has you and I deeply appreciate the time and effort that you have put into awareness and education for EDS.

- Tammy in Wisconsin

Thank you for dedicating your time to providing us all with these great video conferences on EDS & related conditions.
Thank you for providing us with a web site that allows us to share our groups with the community.

- J. Rene in Utah

I thank you very much for your efforts regarding making this information for EDS able to be seen worldwide.   I am from Austria and I have no doctor who is able to help me. EDS is not known in Austria.
 
 

- Doris from Austria

I want to let you know that I appreciate the webinars so very much.  I have learned a lot from them and hope you continue to present them as more is learned about EDS and treatment.

- Barbara

Thank you John, your daughter Deanna and your darling wife who ultimately lost her life. You are the real heroes for sharing this information and getting it out there. We appreciate you and your daughter for being such fantastic advocates of this horrible illness.

- Jane

We do like your webinars which are freely available on youtube after the live session ends. And that is so kind and generous of you. I do live here in Pakistan and I am a young physician with a mast cell activation disorder (not EDS) and I find tremendous help whenever I watch your wonderful webinars. Thank you for the wonderful work that you. And we do regularly watch your youtube videos here in Pakistan.

- Magan from Pakistan

Thank you all of your years of help and support!

- Marsha – Austin EDS Support Group

What an amazing resource for people with all sorts of chronic pain syndromes and diseases!  I think this is wonderful site for people who have disabilities.

- Tara

Thank you for your dedication and selflessness. You make lives brighter and hearts more full. While we may need to rely on braces to physically support our joints, it is your support that has kept so many from crumbling physically and emotionally. Your tireless efforts reach farther and deeper than you could know. Thank you.

- Alexandra B. from Ohio

Thank you for everything you and Deanna do to promote/provide EDS education. It is such a valuable service to the EDS patient, family and physician community!

- Trisha

So exciting to hear about the wonderful things that you continue to do for our zebra community! As a support group, we are so grateful you support us! The DFW group is almost to 650 members and growing! Thank you for all you do for our community!

- Jenny – DFW EDS Group

Hi John and Deanna –

I am so grateful for all of the work you do for us, as individuals and also as group leaders.  Thank you from the bottom of my heart!
 
Most especially I appreciate your webinars, and how great it is that you notify us so far in advance that they are coming up and I like being able to spread that information to my group.  It’s easy when it is an email reminder, I can just forward that.  I love it when I can go to FB and see the notification there too, and then I can just click share and it goes out to my FB group too.  Thank you for making it easy for me to share information with my group.
 
I hope you are staying well (enough) and warm this winter – much appreciation for your work for us!!!

- Sarah – EDS VT

Thank you so very much for all you have done/do  to help support so many people, and their family, friends and caregivers living with EDS!
 

- Christina Metro DC Area EDS Support Group

I wanted to thank you for all you have contributed. My own father never took a real interest in understanding my HEDS. He finally watched one of the educational webinars one day and I think the part about you doing this for your daughter really got to him. He started independently researching HEDS after that. And having real conversations with me about it. It surprised him that a father of an EDSer was so involved but at the same time it sparked something in him. My relationship with him is better today than it had been in 30 years. Thank you again.

- Nilima in Texas

Much gratitude for all that you do!  I am now fortunate to have your educational webinars as part of my arsenal to help me do my best with our EDS patients.

Best wishes to you and your families for the holidays.

- Norman Marcus, M.D.

Thank you so much for your post!

Your wife’s struggles mirror my own in so many ways.

My daughter was diagnosed with EDS almost a decade ago, but the doctor’s in the area considered it a ‘non-illness’, gave us zero information, & zero help.

As both our healths deteriorate, I’m back to looking for answers, solutions, or even  just ideas & direction.

You’ve given me a cohesive way to explain the symptoms to the rhumatologist I go see next month.

THANK YOU!!!!

- Dawn F.

Your website has a wealth of information and we have watched quite a few of your webinars.  You and Deanna are doing a wonderful service!

Thank you, again,

God bless.

 

- Carol from Hawaii

Dr. Pocinki’s webinar has given me HOPE! and the next webinar ties right in with everything I have gone through, so I just wanted to say a special thank you for putting these webinars out there for those of us in search of answers.

I hope and pray I can bring these answers back to my Psychiatrist at Tuft’s and my other Physicians, especially if I I’m successful in getting relief from my symptoms, and help to raise awareness of EDS & POTS to help others.

You & your Team are a blessing – please keep up the good work for us Zebras! I really appreciate all of your efforts. God bless you!

- Leah from MA

Hi John, My daughter Elisabeth has EDS and we’ve attended some of your webinars. Thank you so much for providing this valuable service! We’ve both learned something new from every single speaker.

- Trisha from PA.

Thank you for having the seminars. They are most informative.
I am teaching on Tuesday afternoons, but I will try to attend all Tuesday evening seminars.

Again, thank you.

- Dr. Stalvey from South Carolina

I want to thank you both. John, I remember you from the EDS Conference in Northern Kentucky.  You were starting up the EDS Awareness.com program then. Seemed very sad still from losing your wife, explained her story to my daughter and I.  Very sorry.  I still have the business card.

I hope things are better.  My only child has EDS, then got Lyme. Can’t figure out if EDS could be this bad. I keep trying to find time to view the seminars online.

I just appreciate both your efforts.  As I try to keep my daughter and I both wanting to live, trying to find help, I know there are good docs, just not here.

God bless you both from the EDS community.   Sincerely, Rebecca

- Rebecca – From 2012 Conference

Thank you so much for getting a presenter on the topic of pharmacogenetic testing. I hope that many medical providers get to see this as well.
I am so grateful for the wonderful webinars you produce.  You are wonderful.

- Maria in Chicago

Thank you so much for all you do to help so many EDSers!  We appreciate the webinars and information EDS Awareness provides and will happily provide it to the MetroDCArea support group.

- Christina H. in DC

Dr Pocinki’s webinar has given me HOPE! and the next webinar ties right in with everything I have gone through, so I just wanted to say a special thank you for putting these webinars out there for those of us in search of answers.

I hope and pray I can bring these answers back to my Psychiatrist at Tuft’s and my other Physicians, especially if I I’m successful in getting relief from my symptoms, and help to raise awareness of EDS & POTS to help others.

You & your Team are a blessing – please keep up the good work for us Zebras! I really appreciate all of your efforts. God bless you!

- Leah from MA

Deanna,
My daughter LOVED meeting you!!!  She talked about how much she appreciated having someone who understands how she feels to talk to.  In fact, she talked about how grateful she was to meet you almost the whole way home!!  It was so nice to finally see HOPE in her eyes and not fear.

I cannot thank you all enough.  Honestly, if it weren’t for you and your dad, can you imagine where so many of us would be right now?  That is a terrifying thought to me.  3 months ago, I couldn’t imagine that there was a soul on the planet who she could identify with.  You are simply a gift from God. 
Thank you doesn’t really seem like enough!!!

- Kathy C. in Cleveland, OH

Our Alaska group is expanding very rapidly this past year. Up to nearly 50 members now due to the way I’ve outreached thru a pain management specialist and some other providers. It’s wonderful. Right now Alaska is getting cold and snowy. Our outdoors meets will be slowing down. More of our members are getting surgical procedures so resting mode at the moment. But I will keep you posted on any new things we do. I have members now reaching all the way north to Barrow Alaska. I also have my 5th family member in my personal family (close cousin) diagnosed officially. I was able to walk her thru it. So good things up here.

- Cissy from Alaska

I have learned a lot because of your webinars and “all  that you do you to make a difference in my life and the lives of so many”Thank you for everything you do to help others.

- Kristi

Hello John, Deanna and All at EDS Awareness!
Thank You -Again and Again!
Your webinars continue to help our family and make measurable strides! 🙂
With continued gratitude for your finding a way to help physicians and others understand
the care needs among our population and for all with connective tissue disorders.

- Kathi

John, my world has evolved immensely since you sent me an email a year and a half ago. I have EDS, dysautonomia, Mast Cell, etc. The information and lectures your organize provides have been invaluable.  I will be at the conference in Baltimore and saw your name on the list of attendees.  I really hope to meet you. Thank you again for all your help.

- Sue S. in Cincinnati

If any doctor says there is no treatment for EDS and that you don’t need pain medication, give them the www.edsawareness.com website and tell them there is treatment and pain medication is necessary and they can see for themselves by watching the presentations of EDS specialists dealing with treatment, pain. PT and many, many other EDS and related disorder conditions.

- Jon R. in New England

John  – Thank you for all that you are doing to help with EDS awareness.  You must be as busy in retirement as you were during your career – it is a lot to take on and much appreciated.

 

 

- Ann-Marie W.

Thank you so much for doing the EDS Awareness World-Wide Survey! Very interesting results.  I am an EDS patient advocate in Sweden and I wonder if it would be possible to get an extract of the Swedish participant´s  survey results?
We have for a long time been thinking of doing a similar survey in Sweden, but I realize that after your excellent survey we wouldn´t really have to since you seem to have covered everything. 🙂  Best regards,

- Monica H. in Sweden

Deanna,
Thanks again for this valuable info and absolute and much credit to you for the wonderful work you do on behalf of so many of us. It’s appreciated and then some 🙂

Kindest Regards….and gentle hugs! I love that saying – I’d never heard that before you said it 🙂

- Philippa in Westlake, Ohio

I cannot thank you enough for your generosity and kindness in providing these presentations. I have learned so much, and they have improved my life so much. As somebody who is housebound in Alaska, I have no idea where I would get some of these solutions if it weren’t for your great presentations. Thank you, thank you, thank you!

You guys are really something.  Bless you!!

- Jill B. in Alaska

Thank you so much, again, to Deanna, John and all at EDS Awareness for the resources and support you provide. Your organization, along with a couple of others, give us hope as my son’s health continues to decline and we receive so few answers elsewhere. There really are no words to describe how much “a lifeline” like this matters in challenging times.

Continued best and blessings to all of you,

- Kathi H. in Oregon

I wanted to vote for you for that award the EDNF is giving out, but you weren’t on the list. IMO you do a staggering amount of work to help all of us. A simple ‘thank you’ hardly seems adequate – you deserve an award! 🙂 Please know how much I appreciate all that you and Deanna do for us.

- Colleen M.

Deanna &John, thank you so much for all you do. Have you considered having a place for voluntary donations on your page? I don’t know if you are a not for profit, but many people, including my family, greatly appreciate your efforts and would like to help support them. Thank you for all you do.

- Rona

Thank you for your website. It is very informative and makes a person with Ehlers-Danlos syndrome not feel so alone. Again thank you for all you do.

- Leslie T. in WI

John and Deanna are amazing people with  true dedication to help educate us all that are suffering with EDS. They recognized, so time back, that many couldn’t afford to get to the conferences. So, chose to give of their time and money to bring the knowledge to us right in our own homes by  sharing their webinars. I have learned so much, along with being allowed to have a voice with them. We all need to remain grateful for all they have done for so many – we are lucky!

- Ellen S. in RI

Thank you for Dr. O’Leary’s webinar …. I attend many of your webinars. The slides were terrific to have. I was stunned and appreciative to hear the physician nomenclature for “All in your mind”. Wow!!
Blessing to you for this incredible service.

- Adell S.

Thanks for sharing the EDS information John. My son was diagnosed with it last year. He’s been through four surgeries already. The awareness site was very informative. Hope you are well.

- Scott G.

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Upcoming and Previous Webinar Speakers

  • webinar-image

    John Ferman
    Online EDS Physician CME Education

    Learn More

  • webinar-image

    Anne Maitland, MD, PhD
    “Mast Cell Activation Disorder”

    Learn More

  • webinar-image

    Joshua Milner, M.D.
    “Update on Tryptase Research”

    Learn More

  • webinar-image

    Delia Chiaramonte, MD
    “Practical Stress Management: A Mind-Body Approach”

    Learn More

  • webinar-image

    Manu Sood, MD
    Katja Kovacic, MD
    “Gastrointestinal Motility Disorders and Cyclic Vomiting”

    Learn More

  • webinar-image

    Gisela Chelimsky, MD
    “Hypermobile EDS and Gastrointestinal Issues”

    Learn More

  • webinar-image

    Pradeep Chopra, MD
    “Management of complex pain in children and adults with EDS”

    Learn More

  • webinar-image

    Pradeep Chopra, MD
    “EDS Pain Management – Connecting the DOTS… part 3”

    Learn More

  • webinar-image

    Dr. Ajoy Sarkar
    “Ehlers-Danlos Syndrome Hypermobility Type in the UK: Missed or Just Misunderstood?”

    Learn More

  • webinar-image

    Sara Williams, PhD
    “Biofeedback: Training your Body to Relax”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT
    “Physical Therapy for EDS – Part 2”
    Why does it hurt all of the time?

    Learn More

  • webinar-image

    Markus-Frederik Bohn, PHD
    “Tenascin X and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Marco Castori

    “Multidisciplinary Diagnostic and Management Approach to the EDS Patient”

    Learn More

  • webinar-image

    Professor Claude Hamonet and Dr. Isabelle Brock

    “A French Perspective on Ehlers Danlos”

    Learn More

  • webinar-image

    Dr. Delia Chiaramonte

    “An Integrative Approach to Pain Management”

    Learn More

  • webinar-image

    Dan Doherty — YouScript / Genelex Corp.

    “Pharmacogenetic Testing to Assess Altered Drug Metabolism”

    Learn More

  • webinar-image

    Dr. Alan Pocinki

    “Psychiatric Misdiagnoses in EDS: When is Anxiety not Anxiety?”

    Learn More

  • webinar-image

    Dr. William Ericson

    “Orthopedic Issues in the EDS Hand, Wrist and Arm”

    Learn More

  • webinar-image

    Dr. Norman Marcus

    “EDS & Pain”

    Learn More

  • webinar-image

    Dr. Lawrence Afrin

    “Mast Cell Activation Syndrome”

    Learn More

  • webinar-image

    Diane O’Leary, PhD

    “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients

    Learn More

  • webinar-image

    John Ferman and Deanna Hamm

    “World-Wide EDS Survey Results” by EDS Awareness
    (2544 respondents from 26 countries)

    Learn More

  • webinar-image

    Sara Williams, PhD

    “Cognitive Behavioral Therapy as a Coping Skill for EDS”

    Learn More

  • webinar-image

    Dr. Anne Maitland

    “Mast Cell Activation Syndrome in EDS Patients (Part 2)”

    Learn More

  • webinar-image

    Dr. Neil Schechter

    “Chronic Pain Hypermobile Children”

    Learn More

  • webinar-image

    Karen Foulks, OTR/CHT
    Jesse Garris, Silver Ring Splint Co.

    “Anatomy and SilverRing™ Splints for Ehlers-Danlos Hands”

    Learn More

  • webinar-image

    Dr. Holly Gilmer

    “Chiari Malformation in EDS”

    Learn More

  • webinar-image

    Dr. Blair Grubb

    “Postural Orthostatic Tachycardia Syndrome (POTs)”

    Learn More

  • webinar-image

    Trish Meegan, DPT, L, ATC

    “Physical Therapy for EDS: Including how your posture and thorax/ribcage affects your PT program”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Soft Tissue Surgery in Collagen Disease (for EDS Feet & Ankles)”

    Learn More

  • webinar-image

    Dr. Petra Klinge

    “Tethered Cord Syndrome in Ehlers-Danlos”

    Learn More

  • webinar-image

    Kelly Clancy, OT

    “New and Emerging Manual Therapy Approaches for EDS”

    Learn More

  • webinar-image

    Dr. Clive Bridgham

    “Chronic Pain Alternatives – with focus on inflammation and nutrition”

    Learn More

  • webinar-image

    Kevin Muldowney, MSPT

    “Physical Therapy Protocol for Ehlers-Danlos Syndrome” (using the new EDS Physical Therapy Book)

    Learn More

  • webinar-image

    Dr. Mitzi Murray

    “How, Why and When: Genetic Testing in EDS for the Non-Geneticist”

    Learn More

  • webinar-image

    Ellen Lenox Smith

    “Living Life Again with Dignity Using Medical Marijuana”

    Learn More

  • webinar-image

    Dr. Joan Stoler

    “Update on Complications and Rare Forms of EDS”

    Learn More

  • webinar-image

    Jennifer Ortiz, MPT, WSC

    “Physical Therapy for Sexual Dysfunction in EDS”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. John Mitakides

    “Musculoskeletal Headaches in EDS”

    Learn More

  • webinar-image

    Dr. Patrick Agnew

    “Foot & Ankle Issues with EDS”

    Learn More

  • webinar-image

    Dr. Hal Dietz

    “Connective Tissue Disorder Research”

    Learn More

  • webinar-image

    Dr. Theoharis Theoharides

    “Mast Cell Disorders”

    Learn More

  • webinar-image

    Dr. Brad Tinkle

    “Introduction to Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Ronald Jaekle

    “Ehlers-Danlos and Pregnancy”

    Learn More

  • webinar-image

    Dr. Manu Sood

    “Gastrointestinal Disorders in EDS”

    Learn More

  • webinar-image

    Dr. Forest Tennant

    “Managing Centralized Intractable Pain in Ehlers-Danlos”

    Learn More

  • webinar-image

    Cynthia Allen, GCFP, STMI

    “The Feldenkrais Method”

    Learn More

  • webinar-image

    Dr. Mark E. Lavallee

    “Exercise is Medicine”

    Learn More

  • webinar-image

    John Ferman

    “Support Groups for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Dr. Howard R. Epps

    “Orthopaedic Considerations in EDS”

    Learn More

  • webinar-image

    Jan Dommerholt, DPT

    “Physical Therapy for Ehlers-Danlos, Part 1”

    Learn More

  • webinar-image

    Dr. Henry Burkholder

    “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”

    Learn More

  • webinar-image

    Dr. Peter Byers

    “Vascular Ehlers-Danlos Syndrome / EDS type IV”

    Learn More

  • webinar-image

    Subinoy Das, MD, FACS, FARS

    “Sinus Care for Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Frank Gargano PT, DPT, OCS, CIDN, MCTA, CWT

    “Dry Needling for EDS Pain Management: Can muscle performance be improved?”

    Learn More

  • webinar-image

    Diana Lebron, MD

    “Headaches and Ehlers-Danlos Syndrome”

    Learn More

  • webinar-image

    Shweta Dhar, MD, MS, FACMG

    “Coordination of Care in Adults with EDS”

    Learn More

  • webinar-image

    Kathleen Kane, ESQ

    “Applying for Disability”

    Learn More

  • webinar-image

    Dr. Richard Barnum
    “EDS and Psychiatric Illness Misdiagnoses”

    Learn More

  • webinar-image

    Dr. Anne Maitland
    “Mast Cell Activation Syndrome” Part 1

    Learn More

  • webinar-image

    Dr. Alan Pocinki
    “Chronic Pain, Poor Sleep, Depression, and Fatigue in EDS”

    Learn More

  • webinar-image

    Dr. Derek Neilson
    “Proving the obvious: Next Steps for the Demystification
    of the Ehlers-Danlos Hypermobility Type”

    Learn More

  • webinar-image

    Dr. Peter Rowe
    “Managing Orthostatic Intolerance in EDS”

    Learn More

  • webinar-image

    Prof Joel Lamoure, RPh., DD., FASCP
    “Medical Psychiatry in Pain Management”

    Learn More

  • webinar-image

    Eric Palmer, Orthotist
    “Bracing for EDS”

    Learn More

  • webinar-image

    Dr. John Mitakides
    “TMJ, Cervical Instability and EDS”

    Learn More

  • webinar-image

    Dr. Staci Kallish
    “Cardiac Manifestations in EDS”

    Learn More

  • webinar-image

    “EDS and Pain… Connecting the Dots” Part 2

    Pradeep Chopra, MD

    Learn More

  • webinar-image

    Presenter: Kevin Muldowney, PT Click here for a link to the announcement page Video link is on this page

    Learn More

  • webinar-image

    EDS Pain Management. (Part 1)
    Dr. Pradeep Chopra

    Learn More

  • webinar-image

    Presenter: Michael, Healy, DPT Click here for a link to the announcement page  Video link is on this page

    Learn More

  • webinar-image

    Presenter: Ellen Lenox Smith Click here for a link to the announcement page.  Video link is on this page

    Learn More

  • webinar-image

        Presenter:  Carl Mentesana, DDS Click here for a link to the announcement page  Video link is on this page

    Learn More

  • webinar-image

    Presenter: Stephanie Gandomi, MS Click here for a link to the announcement page. Video link is on this page

    Learn More

  • webinar-image

    Dr. Kenneth Goldschneider
    Pain Management for EDS

    Learn More

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,312

Loading ... Loading ...