Do you suffer from Ehlers-Danlos syndrome? Is there anyone you know who is? If so, it’s time to get ready for World Autism Awareness, which will raise awareness for people with this unusual and difficult-to-diagnose disorder all over the world.
The medical profession has struggled for many years to classify patients with this set of syndromes accurately. There is a push to raise awareness of the condition’s symptoms, raise funds, educate the public, and fundraise for those affected.
Ehlers-Danlos syndromes are a group of more than thirteen inherited connective tissue disorders that affect people worldwide. Mutations in particular genes influence cells’ ability to produce proteins necessary for typical joint construction in people with the disease. Chronic pain, soft skin, the tendency to stretch joints outside their normal range, and internal organ rupture are all signs of these syndromes. Although many of the disorder’s symptoms are minor, some may be life-threatening and necessitate urgent hospitalization.
People with Ehlers-Danlos syndrome have had a difficult time getting correct diagnoses in the past. Many of the clinical signs and symptoms are similar to those of other, more common illnesses, leading to physicians’ misdiagnoses. Ehlers-Danlos syndromes are genetically heritable at their heart. As a result, the correct diagnosis was challenging in a period when DNA testing was not available.
However, there have recently been major progress in classifying and defining the conditions. Researchers published more than eighteen articles in the Journal of Medical Genetics in 2017, elucidating the various types of the disease and better characterizing their characteristics. By posting a summary of the research materials backed by more than ninety experts, the Ehlers-Danlos Society contributed to the body of research and publicly available facts. It was the first significant upgrade in more than two decades.
As a result of this endeavor, scientists now have a much better understanding of the syndrome. The problem is getting the knowledge to doctors, teachers, and the general public.
Before 1997, researchers divided Ehlers-Danlos Syndrome into ten distinct forms based on genetic variants linked to symptoms (such as connective tissue issues). However, as genetic testing improved, the number of Ehlers-Danlos-type syndromes grew, and there are now more than thirteen.
However, the reason for Ehlers-Danlos Syndrome Awareness Month isn’t as simple as advocating for more reliable DNA tests. Many scientists agree that medical science is just beginning to scratch syndromes’ surface linked to the original collection. As a result, genetic testing may not be able to identify all cases of the disease. Some mutations are so uncommon that only a few people around the world are affected by them. An individual with Ehlers-Danlos-like symptoms may be the only example in some cases.
As a result, not just testing but also the clinical symptoms of the disorder must be closely monitored. Individual patients may show all of the symptoms of Ehlers-Danlos syndrome, but DNA tests for the most common types of Ehlers-Danlos may not be able to confirm the diagnosis.
The first Ehlers-Danlos Awareness Month was held in 2006 by the Ehlers-Danlos Society. Since then, the group has actively raised public awareness of the syndrome by assisting individuals worldwide. Under the hashtag “Dazzle Together,” the society attempted some branding and social media outreach in 2017.
The tale behind the campaign’s name is fascinating. Patients with Ehlers-Danlos syndromes were once referred to as “zebras,” a reference to the medical school mantra “when the hoofbeats, consider horses, not zebras.” The original saying instilled in trainee doctors the belief that they should start with the most apparent diagnosis – the horse – and then look at more minor noticeable symptoms – the zebra – later.
Patients with Ehlers-Danlos syndrome have the problem of becoming zebras with a rare disorder. As a result, applying traditional medical school wisdom is ineffective. It is, in effect, counterproductive.
The hashtag’s “dazzle” element is derived from the word “dazzle,” which refers to a zebras group. The “Dazzle Together” campaign was born as a result. Today, the group works together to raise awareness of the disease, raise funds for research, and communicate with the general public through different social media platforms.
Ehlers-Danlos Syndrome Month brings together a diverse group of people. Patients, health providers, foundations, sponsors, and caregivers all work together to spread the vital message discussed here. Brochures, posters, multimedia displays, and guidance about how to better use one’s time are available from the Ehlers-Danlos Society.
EDS, like many rare disorders, is seriously underdiagnosed or misdiagnosed, and it is often misunderstood.
The condition, which may mimic conditions like postural orthostatic tachycardia syndrome, is poorly understood by most doctors and other healthcare professionals. As a result, EDS patients can go years without learning what is causing their symptoms.
Treatment will begin as soon as a person is correctly diagnosed. The patient’s quality of life is maintained and possibly improved by treatment.
More research support and funding are likely to result from increased awareness, leading to new and improved treatments and perhaps a cure for the disease.
Joining forces with the Ehlers-Danlos Society is the first thing you can do. Most years, the group holds so-called “challenges,” in which participants participate in various community activities to collect funds. Many of these activities are enjoyable and tailored to specific interests. Dressing up as zebras, workshops, and coffee mornings are only a few of the official activities hosted by the charity.
Of course, you are not required to participate in any official activities to commemorate the month. There are a variety of things you can do as a person to help the EDS group.
Donating money is maybe the best way to express your gratitude. A significant research effort is currently underway to better understand the disease and find alternatives. With further testing, the genetic defects that cause the condition may be reversed, allowing people to regain control of their health. We’ll have to wait to see what happens.
In any month you can bring awareness by wearing apparels such as “Bendy Happens” t-shirts, hats ect or any other products that brings awareness to Ehlers Danlos. It will be a good way to get the word out.
Lastly, there is also a need for further education for the general public and medical professionals. Since rare genetic disorders may not receive the same level of care or funding as more common diseases, outreach is necessary.
