Thank you for your interest in forming a new EDS support group. We are here to help you through the process. We can mentor and coach you with ideas and recommendations to get you started. We also have senior support group leaders who can help.
Thank you for your interest in forming a new EDS support group. We are here to help you through the process. We can mentor and coach you with ideas and recommendations to get you started. We also have senior support group leaders who can help.
The dedicated volunteers both patients, advocates and medical providers come together to produce written guides to support education about complex symptoms and related conditions. Topics include “What is EDS?,” “MCAS Patient Guide,”“Dysautonomia Guide,” “Tethered Cord Guide,” plus a guide to getting disability when you have EDS.
What if the hero of a bestselling novel shared your struggles—and your strength? Rebecca Yarros’ Fourth Wing, the first book of a fantasy series, follows Violet Sorrengail, a young woman forced to join a brutal dragon rider academy and fighting her way through life-threatening challenges, fierce rivalries, and the unrelenting physical toll of her training. […]
Living with Ehlers-Danlos Syndrome (EDS) often feels like piecing together a puzzle without being able to visualize the final desired image. Patients poke at fixing separate symptoms while no one is tying the whole picture together. This creates difficulties when multiple systems come together like they do in the nutrition and waste mechanisms within the […]
Imagine waking up each day with a body that feels both familiar and unpredictable, where the simplest movements demand careful calculation, and even routine tasks like washing the dishes can hold hidden challenges and pain. This is the world of those living with Ehlers-Danlos Syndrome (EDS), a condition that intertwines with the very fabric of […]
Yes, it’s time to get ready for travel, dietary changes, and potential overwhelm. But we’re here to help you keep the peace!The holiday season can bring joy, but it also tends to come with stress, pressure, and endless obligations that can wear us down. For those of us with Ehlers-Danlos Syndrome (EDS), this time of […]
Welcome back to Research Round-up where we feature some of the latest developments in Ehlers-Danlos syndrome (EDS) research. Hitch up your horse, gather ‘round the campfire, and see what we have in store for you today. ICYMI: a possible blood test for hEDS? Cardiology“Longitudinal echocardiography in pediatric patients with hypermobile Ehlers-Danlos syndrome”Published in the American […]
EDS Awareness publishes a monthly/bimonthly newsletter with content only to be found on this website. Please read our previous newsletters by navigating through the Newsletter menu above or sign up to receive future newsletters in your inbox here:
Building and supporting well educated, confident leaders.
This program recognizes the important role of EDS leaders who help connect, support and educate their members.
This site offers leadership development programs and resources designed to serve local support groups, Facebook and advocacy groups at all stages of their development.
The EDS Ehlers-Danlos Syndromes Nursing Education Program is the first set of online EDS courses for nurses and other healthcare professionals about the care of people who have Ehlers-Danlos Syndromes.
You work so dedicatedly and tirelessly. Bless your heart. I so appreciate it.
John … still advocating away when others would give up. you are truly an amazing man that we all admire.
Thanks, John! Your webinars were my guiding light in the early days with my daughter
I don’t know where we in the EDS community would be without you!
John Ferman. He is an amazing gentleman. He has single handedly done more for the EDS community than anybody.
I very much appreciate your efforts, support and information. It makes a difference!
I can’t begin to thank you for the work you’ve done to enlighten those of us with EDS about our condition.
As a person who suffers from hEDS I am beyond thankful for the fact you guys are bringing not just awareness but you have products for us too! I am emotional writing this with tears rolling down my face for we have been ignored for so long and you guys are a blessing time to […]
Thanks so much for having Dr. Francamano on the webinar. As always your website is hands down the most helpful to all of us who have EDS.
I can’t thank you enough for the service you are providing to help educate both patients and physicians.
Thank you for all of your effort to increase awareness and knowledge of EDS and bless you for taking care of your late wife.
You just made me feel so much less isolated thank you!!!!!! ️
I have started watching the webinars and I am so thankful. I feel more grounded and organized with these educational and organizational help. So much appreciation!
Thank you for the amazing work you are doing. It is exciting to hear about the great success of the EDS Physician CME program and the planned CEU program!
Thank you John! I love being a part of this group! You are such a valuable resource, and you are dramatically impacting several thousand lives…over 200 just in Nebraska!
Thank you so much. I will get to watching and reading all of this information ASAP!! Feeling pretty overwhelmed but this looks like a ton of useful info and can’t wait to get some helpful insights!! Thank you for the hard work of compiling all of this!! You don’t know how much this means to […]
I would like to express my appreciation for the awareness that you have generated regarding EDS and the incredible effort you have put in for this venture. Very grateful for all that you have done and are doing for the EDS affected individuals.
The most beautiful pamphlets that I have ever seen!! Wow – very professionally done and informative! I will be very proud to distribute these I think having professionally looking materials helps people take us more seriously.
You do great work and are consistently there for all those who are working to keep the support groups going. I Refer everyone I hear from to you and the diverse programs that you offer.
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?
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.
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.
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.
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.
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.
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.
Thank you for dedicating your time to providing us all with these great video conferences on EDS & related conditions. Thank you for providing websites that allows EDS Support groups to communicate with their members.
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.
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.
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.
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 […]
Thank you all of your years of help and support!
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.
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.
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!
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!
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 […]
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!
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. […]
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.
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, […]
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.
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 […]
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.
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.
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 […]
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.
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.
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 […]
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 […]
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 […]
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.
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.
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 […]
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 […]
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.
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, […]
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
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 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” […]
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 […]
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.
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.
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 […]
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.
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.