Cornelia De Lange Syndrome Awareness Day 2023: The Cornelia De Lange Syndrome is observed annually on the second Saturday of May, which will occur on May 13 this year. This day was not established until 1989 as a means of educating the public about this condition, its tests, and its diagnostics. It was also created to raise awareness about this genetic syndrome that is still relatively unknown. By spreading awareness about Cornelia De Lange Syndrome (CdLS), we hope to eliminate the stigma individuals and families must endure, and with more people discussing the syndrome, more funding can be allocated to its prevention and treatment research.
HISTORY OF CORNELIA DE LANGE SYNDROME AWARENESS DAY
Cornelia De Lange Syndrome is a rare genetic disorder also known as Amsterdam dwarfism or Bushy Syndrome. It is frequently evident at birth or in early infancy, with a variety of medical complications whose severity varies from person to person.
As early as 1916, Cornelia de Lange Syndrome was identified. People diagnosed with this condition display cognitive and physical traits and characteristics that are almost ‘autistic-like.’ Dr. Cornelia de Lange, a Dutch physician, was the first to characterise the symptoms in 1933. The syndrome is an autosomal dominant trait that may be caused by a defective gene. CdLS has a recurrence rate of 1% to 2% within affected families and affects approximately 1 in 10,000 births in the United States.
The symptoms of this condition are not the same for everyone; there are distinguishing characteristics, such as a small head size and a low body mass index relative to others of the same age. In addition to intellectual development delays, other system abnormalities such as prominent facial features, small extremities, dysplasia, feeding difficulties, seizures, and heart defects may be observed. Diagnosing classic cases of Cornelia de Lange syndrome is typically straightforward; however, due to the wide variety of symptoms, diagnosing mild cases can be challenging.
HOW TO RECOGNISE CORNELIA DE LANGE SYNDROME DAY
Host a Fundraiser
You can demonstrate your support for people with CdLS by hosting local fundraisers. A significant portion of the budget for treatment and research comes from events and grants.
Raise Awareness
You can educate those in your community and society about CdLS. You can accomplish this through social media campaigns or public service announcements.
Find out more
Internet-posted research trends and information on ongoing clinical trials will provide you with additional knowledge regarding CdLS. If you are a health specialist, stay abreast of new methods of prevention and treatment.
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Five fascinating facts about CDLS
It bears the name of a woman.
Catharina de Lange was a paediatrician from the Netherlands, and the syndrome is named after her.
It is not specific to gender
The condition affects nearly an equal number of men and women.
Life expectancy is roughly average.
Individuals who have been diagnosed with Cornelia de Lange syndrome have a healthy lifespan.
It is rather uncommon
It is estimated that one in 10,000 to 30,000 neonates are affected by the syndrome.
Cornelia De Lange Syndrome is commonly referred to as Bushy syndrome
Patients have lengthy eyelashes and bushy or even unibrows.
WHY CORNELIA DE LANGE SYNDROME AWARENESS DAY IS IMPORTANT
It elevates consciousness
The more people discuss and observe this day, the greater their awareness of the disability. This day is dedicated to initiating and fostering dialogue, which is a vital aspect of modern society.
It promotes research.
The funds generated by campaigns held on this day are indispensable. These funds serve as a catalyst for efforts to advance research and enhance care for individuals diagnosed with CdLS.
It encourages Inclusion
Because there is still a lack of information and understanding about CdLS, affected families may feel isolated. We believe that this day of awareness is a wonderful opportunity for families facing similar difficulties to connect, join together, and share stories, resources, and information.
CORNELIA DE LANGE SYNDROME AWARENESS DAY DATES
| Year | Date | Day |
|---|---|---|
| 2022 | May 14 | Saturday |
| 2023 | May 13 | Saturday |
| 2024 | May 11 | Saturday |
| 2025 | May 10 | Saturday |
| 2026 | May 9 | Saturday |
