Ehlers-Danlos Syndrome Awareness Month
Do you have Ehlers Danlos syndrome? Are you aware of someone with Ehlers-Danlos syndrome? If so, then it’s time to get ready for the eponymous month, raising awareness for people across the globe with this rare and difficult-to-diagnose condition.
The medical community has struggled for years to correctly identify these patients. There is a push to raise awareness of the condition and raise funds, educate the public, fundraise for those who are affected, and raise money.
Ehlers Danlos syndromes include more than 13 hereditary conditions that affect connective tissue in the body. The condition is caused by mutations in specific genes that alter the cells’ ability to make proteins necessary to build joints. These syndromes can cause chronic pain, fragile skin and the inability to flex the joints beyond their normal range. Although many symptoms are not severe, some of these can be serious and may require hospitalization.
Ehlers Danlos syndrome sufferers have struggled historically to get accurate diagnosis. Ehlers-Danlos syndrome symptoms are often similar to other diseases. This causes doctors to misdiagnose patients. Ehlers Danlos syndromes can be traced back to genetics. It was therefore difficult to diagnose accurately in an era without DNA testing.
However, significant progress has been made in recent years towards identifying and classifying the conditions. More than 18 papers were published in the Journal of Medical Genetics in 2017. These papers clarified the various types of the disease and characterized their characteristics. The Ehlers-Danlos Society contributed to the body research and public-available information by publishing a review of the research materials. This was supported by more than 90 experts. This was the first major update in more than 20 years.
This effort has led to a significantly improved scientific understanding of the syndrome. It is now up to us to filter this information to schools and doctors, as well as the general public.
Prior to 1997, Ehlers-Danlos Syndrome was classified into ten types based on genetic mutations that were associated with specific symptoms (such connective tissue issues). However, as genetic testing improved, the number and variety of Ehlers Danlos-type syndromes increased. There are now more than 13 currently classified.
However, the rationale behind Ehlers Danlos Syndrome Awareness Month isn’t quite as simple as calling for better DNA tests. Medical science has only begun to understand the extent of the syndromes that are related to the original set. Therefore, genetic testing may not be able to detect every case of the disease. Some mutations are so rare that only a few people may be affected. A person with Ehlers Danlos-like symptoms might be the only one.
It is important to be attentive to clinical manifestations and not just testing. Although individual patients may show all signs and symptoms of the condition, DNA testing for the most common Ehlers Danlos varieties may not be able to confirm it.
In 2006, the Ehlers-Danlos Society organized the first Ehlers-Danlos Awareness Month. The organization has been working tirelessly to raise awareness of the condition and support people with it around the globe. The society tried to brand itself and use social media under the hashtag “Dazzle Together” in 2017.
It is fascinating to learn the story behind the campaign’s name. The story behind the campaign’s name is interesting. Historically, Ehlers Danlos patients were called “zebras” by medics. This was a reference to the old saying that trainee doctors should first diagnose the horse and then investigate the more obscure symptoms.
Ehlers Danlos patients have an issue because they are zebras, which is a rare condition. They don’t benefit from the medical school wisdom. It is actually counterproductive.
The hashtag’s “dazzle” tag comes from the old way of referring a group of Zebras as a dazzle. The “Dazzle Together‚Äù campaign was born. Now, the community is working together to raise awareness, fund research and reach the public via social media.
Ehlers Danlos Syndrome Month involves many people. Patients, caregivers, healthcare professionals, donors, charities and donors all help to spread the important message. Brochures, posters, digital presentations and instructions are provided by the Ehlers-Danlos Society for members on how to make the most of their time.
How can you show your support and help those who have Ehlers Danlos Syndrome? There are many things you can do.
You don’t have to participate in the official celebrations. You can do a lot as an individual to help the EDS community.
Donating money is a great way to show support. There is currently a huge research effort to better understand the condition and find treatment options. It is possible to reverse the genetic mutations that lead to the syndrome and give people back control over their health with further research. We’ll have to wait and watch.
Further education is also needed for the general public, teachers, and medical professionals. Rare genetic conditions are less well-known and receive less support than more common conditions. They require outreach.
You can also dress up as a Zebra if you fail to do so.