My journey to being diagnosed with EDS was long and very challenging taking more than 10 years. I felt very alone. Being dismissed was common despite very challenging symptoms. There were also very long wait times to access diagnostic and treatment care, so I struggled for a long time. There are just not enough medical practitioners that understand EDS. I had been an elite athlete prior to the EDS progressing. I was a rower, a figure skater, and a swimmer. I had competed at the national level. My joints started to give way, I had more injuries, and the fatigue and pain worsened. I also had a comorbid condition, POTS, which made life almost impossible. After I was diagnosed, the EDS clinic at Toronto General Hospital in Toronto, Ontario, Canada, told me about the Ehlers-Danlos Society. Unfortunately, soon after, I had a stroke related to an aneurysm related to the EDS. I was in the hospital for a very long time. I was a registered nurse before the stroke. Newly in a wheelchair, my world shrunk in someways. My life really changed. I connected with the Ehlers-Danlos Society and they are a fantastic organization. They are working hard to decrease the diagnosis journey, which is amazing. Although I cannot practice bedside, I still prioritize education. Having developed the ECHO program, the Ehlers-Danlos Society allows healthcare providers like me to learn about the condition, the diagnosis and the treatment, in an interdisciplinary context. They also hold global conferences which drastically increase the networking and sense of community. They hold International virtual support groups. I don't feel so alone and I feel validated. My world is opening up again, and I am looking forward to learning some para-canoeing soon. I have been in the hospital for long periods of times, so many times, and I am ready to thrive again. We need more money for research and for education and for all of the outreach that the Ehlers-Danlos Society prioritizes. They made the world of difference to me.
I'm Katia Yago from Barcelona, Spain. I'm 42 years old, and my medical journey started when I was a kid. I spent the first year of my life at a hospital and was sick most of the time as a child. I more or less made it until I turned 34, but at that age, my body couldn't go any further. It’s taken me a lifetime to understand what was going on in my body and finally, nowadays I’ve started to find answers.
I suffer from 7 vascular compression syndromes, have hypermobile Ehlers-Danlos syndrome as well as comorbidities such as visceroptosis, gastroptosis, nephroptosis, gastroparesis, mast cell activation syndrome, central sensitization syndrome, postural orthostatic tachycardia, dysautonomia, a bilateral luxation of the temporomandibular joint, frequent hip, elbow, knee, and finger subluxations, craniocervical instability, atlantoaxial instability, superior odontoid migration, occult tethered cord syndrome, abdominal and inguinal hernias, pelvic prolapses, diastasis recti and an abdominal eventration, recurrent SIBO, collagenous colitis, scoliosis, hyperkyphosis, hyperlordosis, digestive disorders, an intestinal sub occlusion, intestinal hyperperfusion, abdominal adhesions, pelvic and bladder dysfunction, anxiety disorders, pudendal neuralgia, systemic lupus erythematosus, among others.
From my experience, there is no better mindset than self-acceptance. You may wonder why I make this statement, and the answer is simple: I keep adding diagnoses, and my body is falling apart. I’m receiving palliative care, but still can’t manage to control my pain. I have already lost count of all the surgeries that have been recently proposed to me. The fingers of both hands are not enough to count them. However, after 11 interventions, 23 coils, glubran, foam, 3 bypasses, a stent, a nephropexy, the release of the celiac trunk, a severe chylous ascites with pulmonary atelectasis, a drainage of 15 liters of chyle, having lost 20kg in the past 8 months and not being able to eat solid food, my body is exhausted, and my head keeps repeating: "To what extent are you going to continue trying to gain quality of life and at what price?"
At this point, self-acceptance is the key, because now that I have admitted that my body is a real challenge, and I'm certain that I have tried all options at my disposal, I live at peace with myself, even knowing that I am in pain 24 hours a day, every single day of the year. What I know for sure is that I am immensely grateful for the constant help and support of all my doctors, but my body refuses to cooperate.
As long as my body allows me to do so, I will continue to advocate for the visibility of Vascular Compression Syndromes so that other patients do not have to go through a journey like mine. This is why I'm a member of the Executive Board of the Spanish Association of Vascular Compression Syndromes AESCOV, to make our voices heard and spread awareness worldwide.
Tuning in to an amazing Ehlers-Danlos conference is a fantastic way to celebrate Disability Pride Month!
The conferences and EDS Echo trainings have empowered me as both an advocate and a patient. The knowledge shared in these events has not only empowered me but also helped me better train my medical teams and those in the medical facilities I frequent regularly.
Navigating the medical system can be challenging, especially when you are the patient yourself. Invisible disabilities often make it hard to stand up for oneself and advocate for our needs. The specialists we hear from at these conferences are incredibly knowledgeable. Here, we gain access to the ultimate experts, arming us with invaluable knowledge to take back to our communities.
The Ehlers-Danlos Society is deeply committed to bettering the lives of those with EDS and HSD, an underresearched and poorly treated condition. There are currently long diagnostic delays and no standards of care for those with the disease. While the Society seeks to advance our knowledge of what causes the symptoms and how best to alleviate the patients' suffering, they remain wholeheartedly devoted to a patient-focus. As the CEO is oft quoted, "Nothing about us, without us." I am impressed by their allegiance to this approach.
The Ehlers-Danlos Society has been a fantastic resource for myself, colleagues, and our patients. Their events and educational programs are top-notch and the support they offer to the community is excellent. The staff is a pleasure to work with! I wish that every rare disease had an organization like this one to work so hard raising awareness, spreading education, furthering research, and supporting those who have the condition and their families. Keep up the great work!
This charity is truly remarkable in its dedication to helping people and creating a global support system. By bringing individuals together, it fosters a sense of community and belonging, while making a tangible difference to countless lives. Their unwavering commitment to positive change, education, awareness and compassionate outreach sets them apart, making them a beacon of hope and support for us all. Keep doing what you're doing!
A charity with immense dedication to research and education ensuring greater awareness and understanding of EDS and HSD. Their events provide excellent opportunities for learning and connection. Overall, The Ehlers-Danlos Society is a crucial support system, making a significant positive impact
I feel confident in giving to The Ehlers-Danlos Society every year. I can see directly how my donation is making an impact on their mission and the great work that is provided for the EDS and HSD community.
I had an outstanding experience with The Ehlers-Danlos Society. Their dedication to their mission and the positive impact they have on the community is truly inspiring. The team is passionate, compassionate, and incredibly efficient in their work.
A wonderful charity, that does an amazing job of bringing people together to share knowledge, inspirational stories, and advice. It's been great to watch the charity grow from strength to strength. They do an amazing job of spreading awareness.
The EDS Society has fundamentally changed the relationship of the condition with science. Patients are being gaslit less and studies are helping them to be understood
I’ve participated as a board member since 2018 and have been amazed at the growth in the society, not only in terms of budget but also professionalism and impact. I’m proud to contribute!
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I am a physician with a daughter with hEDS. I have been quite impressed with the organization, the extent of its activities, and the professionalism of the team. This is the main organization working to better the lives of people with EDS and HSD. I particularly like the dedication of the leadership team and the fact that their compensation is quite reasonable. This is not one of those non-profits that pays exorbitant salaries to its officers; rather, the money goes toward its mission. There is strong accountability to the volunteer board.
The Ehlers-Danlos Society has an impossible task of raising awareness for a little known rare disease that affects 650,000 of us in the U.S. alone. It’s actually thought that many are still undiagnosed because of the lack of awareness. As it stands, way too many of us wait decades for a diagnosis and even there, there’s no cure or treatment. The Ehlers-Danlos Society gives a voice and a platform to all of us, providing online support and awareness and visibility through social media. This year they made the impossible possible by snagging coveted space on the NASDAQ billboard in Times Square which really boosted our awareness campaigns in May during Ehlers-Danlos Month, and featured several of us patients on the billboard. Lara Bloom, Danielle, Erin and all the supportive staff make this non-profit one of the best around. They are number one in advocacy, awareness, education and support!
I have known The Ehlers-Danlos Society for a few years and I cannot express how valuable their work is. Not only are they very supportive of patients, but they do a lot of training for both patients and specialists. I have always found a lot of help and listening from them and I am very grateful to them.
The EDS society is committed to educating the public and medical professionals to help everyone and to raise awareness. Everyone is kind and involved in moving the research forward. Great organization!
When my son was diagnosed with Vascular Ehlers Danlos at 9 years old and suffered a major catastrophic health incident - The Ehlers-Danlos Society was instrumental in connecting us with medical professionals and other families suffering with V-EDS and other strains. We had never even heard of V-EDS when our son was diagnosed and once connected with The Ehlers-Danlos Society - had a community almost overnight. The value of the work they are doing for patients and families suffering with this rare genetic disorder is priceless. They provide excellent connection, resources and education.
As a clinician specialising in EDS, The Ehlers-Danlos Society continues to excel in delivering patient education and support as well as pathways for health care professionals continued learning & research opportunities. Patient outcome are certainly improved on engagement with the Society resources and networks. Having had the privilege of working closely with the society I directly see the care and commitment to improving lives of those with EDS across the society.
The Ehlers-Danlos Society never ceases to amaze me. Acknowledging the size of the team, they do tremendous work. They are surrounded with and supported by incredible physicians, researchers, and community members who are dedicated to research, education, and direct-impact support.
It is a pleasure to learn from the leadership team who is embedded into the community and hands-on with furthering the mission of the organization, and educating the world about this rare condition. Kudos to the commitment of each member of the team.
As a donor, I feel secure in knowing my money is being used and directed for a great cause. The research, education, advocacy, and care that The Ehlers-Danlos Society provides for the EDS and HSD community is top-notch. The providers, scientists, and researchers all provide such hope to the zebra community. Being able to see how my donations impact the work the Society is able to do is encouraging and comforting knowing my money is being stewarded well. Very impressed with The Ehlers-Danlos Society and the great things it has accomplished and I feel confident knowing that I will continue to be a supporter.
While I do not suffer from EDS or any of its related symptoms, I chose to volunteer because of the passion of the CEO and the Society to improve the quality of lives of those affected. Furthermore, the charities funding does not make the employees pockets deep, it goes to grants to assist in finding cures and treatments, education and networking within the community. It's truly a mission-based organization with many dedicated individuals.
The Ehlers-Danlos Society has done so much for people with EDS and HSD. I had never been in a room with so many zebras until my first conference and the experience was life-changing. I'm so glad we have an organization like this advocating for us.
The Ehlers-Danlos Society is trailblazing across the world with their programs and events. They are the place I came to when I was diagnosed and the support and education they provide is second to none. They have every researcher and health care professional round their table and the resources they provide are reliable and collaboratively produced. I am also very impressed at the amount of research providing they have provided in such a short space of time.
This is a wonderful and highly professional organisation that I am proud to support. It punches well above its weight and is seen as a leader and innovator in much of what it does. It has worldwide reach in focussing on research as well as patient and medical community education and support. It has enlisted the help of the very top medical experts in multi-disciplinary fields to enhance understanding and treatment of Ehlers Danlos Syndrome and Hypermobility Sprectrum Disorder.
It is professionally and transparently run and has comprehensive governance procedures - its staff are second to none.
I have been in awe of how this small organisation has developed into such a highly professional body offering advise, support and expertise to the Ehlers Danlos community. It works with an astounding number of highly qualified medical experts within the field in order to concentrate on research, education and direct support as well as focusing the team on raising money and effective appropriation of funds to further enhance our knowledge of this complex and rare condition.
This charity has brought together the leading experts from around the world to support, educate and research EDS and HSD. During the time that I have been volunteering with them they have raised a huge amount of awareness and brought credibility to these conditions. They have invested in educating medical professionals through ECHO and also invested in important research which leads to improving care and diagnosis.
I found this place after a they had an original location in McLean, VA. This was back in 2014. I went in for migraines that would not go away or were easily treated at Johns Hopkins and I came out with a primary diagnosis of EDS and a referral to genetics. Had it not been for this society, I would not have known to go to genetics w/o a 2 year waitlist in Cambridge, MA to see Dr. Jeff Milunsky at The Center for Human Genetics. With a positive family history aneurysms, I did not have time to wait 2 years for Dr. Francomano. I also did not have to wait to know whether I had a median age of expiring too (#VEDS).
Review from Guidestar
I'd rate zero stars if I could. There is a long history of mismanagement of donations, illegal fundraising, and serious conflicts of interest with many of the "lead" doctors and people in charge. Multiple studies have been promoted, fundraised for and then never happen- see the CINK study. This is not a patient-led, patient-orientated charity. This is something else entirely.
Review from Guidestar
As a long time member and volunteer, I have seen this group grow from one person's vision to THE most recognized and reliable source of information for this under-diagnosed disorder. The new EDS Clinic in Baltimore is going to meet the needs of both patients and top quality research for years to come.
Review from Guidestar
I can't imagine having to live without the support, inspiration and hard work of EDNF and its' membership. Having lived in emotional isolation for so many years without someone to share the EDS journey and the burden of its' many trials, I have now come to feel part of a growing community of EDSers on a crusade for awareness and better medical care.
After all three of my children were diagnosed with Ehlers-Danlos syndrome I turned to the foundation for information and support. Ehlers-Danlos National Foundation is THE source for all information relating to this inherited disorder of the connective tissue and offers the combination of science and support. As a member of this organization I have access at my finger tips 24/7 and receive an incredible monthly email newsletter as well as a quarterly printed publication mailed to my house. It is the best resource available for anyone/everyone looking to learn more! www.ednf.org
Ehlers-DanlosSociety 12/19/2022
Hi allylovespono, We have a platinum seal of transparency from Guidestar. There has not been any illegal fundraising or mismanagement of donations. 990s and financials can be reviewed here: https://www.ehlers-danlos.com/about-us/impact-reports-and-financials/ There have been no conflicts of interest. At all events, in presentations, and through EDS ECHO, this is made clear. Project ECHO®, in compliance with the ACCME Standards for Integrity and Independence in Accredited Continuing Education, requires that anyone who is in a position to control the content of an educational activity disclose all relevant financial relationships they have had within the last 24 months with an ineligible company. CINK study was funded by ENDF. Full details are here including work done on the study: https://www.ehlers-danlos.com/research/funded-research/2014-2015-funded-research-ehlers-danlos-national-foundation/ Our funded research is here: https://www.ehlers-danlos.com/research/funded-research/