National Cornelia De Lange Syndrome Awareness Day
National Cornelia De Lange Syndrome Awareness Day:
Every year on the second Saturday in the month of May, the National Cornelia De Lange Syndrome Awareness Day or the National CdLS awareness day is observed.
Year | Date | Day | Where |
2023 | 13th May | Saturday | United States |
2023 | 11th May | Saturday | United States |
2025 | 10h May | Saturday | United States |
Twitter Hashtags:
#NationalCorneliaDeLangeSyndromeAwarenessDay
#CorneliaDeLangeSyndromeAwarenessDay
Related: Other National Days Celebrated on May:
National Take Your Parents To The Playground Day
National Defense Transportation Day
Why National Cornelia De Lange Syndrome Awareness Day?
Cornelia De Lange Syndrome raises challenges across multiple attributes of a person which is not limited to the medical health but also on the cognitive and physical front. The disorder generally is found by birth and yet cannot be diagnosed right away which makes it an extremely difficult syndrome to treat. Referred shortly as CdLS, the syndrome is also referred to by the names Amsterdam dwarfism and Bushy syndrome. The syndrome can affect as many as 1 person in 10000 to 30000 people and can lead to abnormalities in the development of the child. And yet not many are aware of this syndrome and hence we celebrate the National Cornelia De Lange Syndrome Awareness Day to raise awareness about this rare genetic syndrome or disorder.
How can we observe National Cornelia De Lange Syndrome Awareness Day:
The National CdLS day is all about creating and spreading awareness about the Cornelia De Lange Syndrome among the masses. While the number of people affected by this disorder is quite low, the challenge is that this disorder is not recognizable at the early stages.
Here we bring to you some ways to observe this day and spread more awareness on this syndrome to the masses.
- On this day if you already know of anyone who is suffering from Cornelia De Lange Syndrome and spend the day with them. You can make it a day to be remembered for them and post about it on your social media and other online pages.
- You can spread awareness about the Cornelia De Lange Syndrome using your social media with tags like #NationalCorneliaDeLangeSyndromeAwarenessDay.
- You can organize events like quizzes, puzzles and other activities which can help people to get more information about the disorder and how they can cope up with it.
- Recognizing the symptoms is possible even before the birth of the child but the key is the right testing method to employ. In fact, many people who have this syndrome are themselves not aware that they are affected.
Interesting facts about National Cornelia De Lange Syndrome Awareness Day:
On this National Cornelia De Lange Syndrome Awareness Day, let us first get some facts straight about the Cornelia De Lange Syndrome, a developmental disorder that is tough to diagnose before birth and is a very rare genetic disorder.
- The syndrome occurs in 1 person per 30000 to 40000 births and is usually not easy to detect before birth.
- The problems of this disorder include growth issues, deformities in the structure, debilitating growth, and difficulties in behavior. If not diagnosed correctly on time, then this could result in twisted bowel in some cases.
- Ultrasound during the second and third trimesters of the pregnancy can help in the early detection of this syndrome. But the actual diagnosis of the syndrome is done after the birth of the child.
- The CdLS can have effects ranging from mild to severe in different cases and the life expectancy is seemingly normal in many of the cases.
- The cases are equally found in both men’s and women’s children and affect the postnatal and prenatal growth of the baby. It can result in intellectual disability and also distinctive features on the face.
- There are only supportive therapies and treatments for the symptoms that are currently available for CdLS. There are also surgeries like diaphragmatic hernias, cardiac defects, cleft palate which can be performed to make life as normal as possible for the affected.
- The syndrome can also have an impact on the brain of the children and adults who suffer from it.
History of National Cornelia De Lange Syndrome Awareness Day:
The commemoration or the initiation of the day was first initiated in the year 1989 in an effort to raise awareness about this genetic disorder. We do not have more information on who or what triggered the observation of this day though. But we do know the history of how the name of the syndrome came into being. While the condition might have been in existence for many years, the first documentation being made in the year 1933 by Dr. Cornelia De Lange. The syndrome was therefore named after her for her documentation of patients with this condition.