What are the latest advances in Ehlers Danlos?

Here you can see the latest advances and discoveries made regarding Ehlers Danlos.


Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues in the body. These disorders are characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. EDS can vary in severity and can affect multiple systems in the body, including the musculoskeletal, cardiovascular, and gastrointestinal systems.



Over the years, there have been significant advances in understanding and managing Ehlers-Danlos syndrome. Here are some of the latest developments:



1. Genetic Discoveries:


Researchers have made significant progress in identifying the specific genetic mutations associated with different types of EDS. This has allowed for more accurate diagnosis and classification of the syndrome. Genetic testing can now be used to confirm the presence of specific gene mutations, aiding in personalized treatment plans.



2. Multidisciplinary Approach:


Medical professionals now recognize the importance of a multidisciplinary approach in managing Ehlers-Danlos syndrome. This involves a team of specialists, including geneticists, rheumatologists, orthopedic surgeons, physical therapists, and pain management experts, working together to provide comprehensive care. This approach ensures that all aspects of the syndrome are addressed, leading to improved patient outcomes.



3. Improved Diagnostic Criteria:


The diagnostic criteria for EDS have been refined and updated to reflect the latest research and understanding of the syndrome. The 2017 International Classification for Ehlers-Danlos Syndromes provides more specific guidelines for diagnosing the different types of EDS. This has resulted in earlier and more accurate diagnoses, allowing for timely intervention and management.



4. Management of Symptoms:


While there is currently no cure for Ehlers-Danlos syndrome, there have been advancements in managing its symptoms. Physical therapy and exercise programs tailored to the individual's needs can help improve joint stability and function. Occupational therapy can assist in managing daily activities and reducing the risk of injury. Additionally, advancements in pain management techniques, such as the use of medications and targeted interventions, have provided relief for individuals with EDS.



5. Research on Coexisting Conditions:


EDS often coexists with other conditions, such as postural orthostatic tachycardia syndrome (POTS) and gastrointestinal disorders. Ongoing research is shedding light on the relationship between EDS and these coexisting conditions, leading to improved understanding and management strategies. This research has the potential to enhance the overall care and quality of life for individuals with EDS.



6. Patient Advocacy and Support:


The EDS community has become more organized and vocal in recent years, leading to increased awareness and support for individuals with the syndrome. Patient advocacy groups and online communities provide a platform for sharing experiences, resources, and information. This support network plays a crucial role in empowering individuals with EDS and their families, promoting self-advocacy, and driving research and policy changes.



While these advances in understanding and managing Ehlers-Danlos syndrome are promising, there is still much to learn. Ongoing research and collaboration among healthcare professionals, researchers, and patients are essential in furthering our knowledge and improving the lives of individuals with EDS.


by Diseasemaps

There aren't any major advances. We still don't know what causes every EDS type. Most of the genes are discovered but... What my geneticist told me was: swim and go to physiotherapy. That's what I must do to try and have a life as normal as possible

5/25/17 by Maria 2051

Eds had just been reclassified. Study's and trials continue to try and discover the gene responsible for eds and to discover a cure

5/27/17 by Jude 2050

For the first time ever EDS is gaining attention and research is underway all over the world. It's exciting

5/28/17 by Celi 2000

Honestly, there aren't many. Doctors are learning more about the genes involved, but that's not helpful to patients directly.

5/31/17 by KathrynOConnor 2200

So far scientist and researches have found several new types of Ehlers Danlos syndrome, and are currently working on why it is passed on.

9/27/17 by Lbond94 4100

There isn't a lot of advances but they are currently doing research

10/6/17 by Sasha 2050

Ehlers danlos has just been reshuffled to clarify the critiria for diagnosis

10/7/17 by Sharon 7050

Education and awareness! I'm comforted by the fact that we have a community of people looking for answers and a willingness to help each other. The advances in bracing, physical therapy, nutrition and accessible data is right at our splinted fingertips. Let's support each other and share information to create the best quality of life possible!

10/25/17 by Dolores 3050

There are a few recent studies about managing pain in EDS through various therapies. The Ehlers-Danlos Society is planning a study on nutrition in EDS and there's a study going on looking for the gene responsible for hypermobile EDS.

1/14/18 by stairphobe 3070

Scientists are trying to design a gene editing procedure to help with a clinical cure so people with Eds can produce collagen effictivily

9/29/19 by Amy 13500

In 2018, the groundbreaking Hypermobile Ehlers Danlos Genetic Evaluation (HEDGE) was launched. The Ehlers-Danlos Society brought together a highly experienced international group of physicians, geneticists, and technical volunteers to form the Hypermobile EDS Genetic Research Network, dedicated to finding the genetic cause, or causes of hEDS. Of the 14 subtypes of the group of connective tissue disorders known collectively as the Ehlers-Danlos syndromes (EDS), only the hypermobile type does not yet have identified genetic markers. Over 2019 and 2020, the HEDGE study will recruit, screen, and undertake genetic sequencing tests on 1000 individuals who have been diagnosed with hypermobile EDS by the most recent clinical criteria established in 2017. The HEDGE study would not be possible without the EDS and Related Disorders Global Registry. Launched in July of 2018, the Global Registry is a collection of standardized health information provided by thousands of patients with all forms of EDS and hypermobility spectrum disorders (HSD), allowing researchers to compare and analyze patient data on a much larger scale than possible in individual research studies alone. The Registry has the potential to unlock countless discoveries about all forms of EDS and HSD and lays the groundwork for large-scale research efforts like the HEDGE study. This study has Institutional Review Board oversight and approval by the Genetic Alliance (IORG0003358) IRB (IRB00003999). The Genetic Alliance Federal Wide Assurance number is: FWA00017292. Protocol EDS002 has been approved by the Genetic Alliance IRB (Federal registration number IORG0003358). Information can be found on this IRB by putting Genetic Alliance in the NAME search field on the Office of Human Research Protections website.

3/11/20 by MegTheMariner 1870

Research is still ongoing.

5/12/20 by Alex 3551

Sorry there is no cure for ehlers-danlos syndrome but treatment can help you manage your symptoms and prevent further complications

11/19/21 by NuNu 2550

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