EDS Awareness Month – May 2022

EDS Awareness Month is observed annually in May. Ehlers-Danlos syndrome (E.D.S.) is a collection of over 13 hereditary connective tissue disorders. Hypermobile tissues being a common symptom, the condition is also known as Hypermobility Spectrum Disorder (H.S.D.). If you’re someone living with this condition or have a loved one suffering from the same, we are here for you! Going through this condition can debilitate both patients and caregivers. This month is to inspire people to learn about this condition and reach out to people with the disorder.

History of EDS Awareness Month

Although Ehlers-Danlos syndrome was identified back in the early 20th century, its classifications were not known until recently. Until 1997, medical researchers could figure out 10 specific types based on genetic mutations of tissues. With the progress in genetic testing, however, they have now detected over 13 classifications. The list might keep expanding as the research is ongoing.

Many researchers believe that medical science has yet to detect all the instances of the disorder. At present, they are only just scratching the surface of the initial syndrome. And that’s the very problem with E.D.S. While it’s not a rare disease, it cannot be easily diagnosed.

This brings us to the purpose of E.D.S. Awareness Month. It was first started by the Ehlers-Danlos Society, a non-profit organization, in 2006. They have since been working tirelessly to improve public consciousness of the condition around the globe. They provide support to patients and also conduct in-depth research as much to get to the root of the disease as to keep abreast of the developments.

In 2017, the society was to start a social media outreach program with #DazzleTogether, which eventually gave birth to the “Dazzle Together” campaign. The idea comes from the collective noun ‘dazzle’ used to refer to a group of zebras. This again goes back to the old medical school motto — when you hear hoofbeats, think of horses and not zebras. We think that’s amusing!

Keeping this in mind, we should do our bit to be there for the dazzlers. There are various ways to show support from donating money or distributing brochures on behalf of the Ehlers-Danlos Society.

EDS Awareness Month timeline

1901
It's First Recognized

Edvard Ehlers recognizes the condition as a distinct entity.

1908
Detection of the Features

French dermatologist Henri-Alexandre Danlos suggests skin elasticity and fragility as the cardinal features of the syndrome.

1960s
The Genotypes are Discovered

The genotypes for E.D.S. are identified, and mutations in many genes cause the disorder.

1998
E.D.S. is Classified

Peter Beighton publishes the classification of E.D.S. as per the Villefranche nosology.

EDS Awareness Month FAQs

Is E.D.S always genetic?

Ehlers-Danlos syndrome is a condition of the bone joints. It can be genetic, but sometimes it occurs by chance and it is not contagious.

What are the symptoms of E.D.S. in humans?

A person with E.D.S. can experience fragile skin, muscle weakness/pain, highly elastic or velvety skin, loose joints, early appearance of wrinkles, etc.

When does E.D.S. start?

It is often diagnosed at birth.

How to Observe EDS Awareness Month

  1. Join a community event

    If you want to help, you may consider getting involved with any local community that’s raising awareness about Ehlers-Danlos syndrome. Be a part of the activities to show your support for the cause and reach out to people in need.

  2. Organize a session

    This is also a good time to take the lead and host a session on E.D.S. awareness in your neighborhood, at your kid’s school, or a local club. The good thing about awareness months is that you can have week-long sessions.

  3. Go the extra mile

    Make a difference by doing your bit. Join rallies, donate to or take part in fundraisers, volunteer as a caregiver for a day, and so on.

5 Facts You Didn’t Know About E.D.S.

  1. Stretching helps

    Just because someone is hypermobile doesn’t mean they shouldn’t stretch.

  2. Rarely diagnosed

    Most of us might not be aware of this condition, but it is quite common in many individuals — it is the lack of knowledge and diagnosis that makes us think E.D.S. is a rare condition.

  3. Can affect mental health

    Physical impairments or discomforts can often disturb patients, leading to mental health problems — the least we can do is to be kind to the ones suffering.

  4. Slow healing

    E.D.S. cannot be cured in a jiffy — this might sound disheartening, but the good part is that it heals over time with necessary care and effort.

  5. Easily bruised

    People with E.D.S. tend to have fragile skin because of the low production of collagen and hence get bruised easily.

Why EDS Awareness Month is Important

  1. It shows support to the ones suffering

    This month is celebrated not only to raise awareness about E.D.S. but also to show support to people who live with or are diagnosed with the condition. This awareness month can help us bring attention to other conditions.

  2. It breaks the stigma

    Many people carry the stigma of bearing a physical disability or condition. Let’s break this cycle and be a little kinder to them by lending a helping hand.

  3. Spreading the word

    EDS Awareness Month is an effort to help people understand the impacts of E.D.S. on a person, be it a caregiver or a patient. Being a difficult-to-diagnose condition, E.D.S. can be quite a bummer to many. This month allows us to know about this condition so we can treat it better.

EDS Awareness Month dates

YearDateDay
2022May 1Sunday
2023May 1Monday
2024May 1Wednesday
2025May 1Thursday
2026May 1Friday
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