Cloves Syndrome Awareness Day (CSAD): Cloves Syndrome is a rare genetic disorder that causes overgrowth of body tissues. Check out this article to know about its causes and impact on quality of life.
Every year August 3 is observed as CSAD globally. The day aims to spread awareness about the rare genetic disorder. Its emphasis is on action to gather community support.
Cloves Syndrome Awareness Day: 03 August
- 2024: August 3, 2024 [Saturday]
- 2025: August 3, 2025 [Sunday]
- 2026: August 3, 2026 [Monday]
- 2027: August 3, 2027 [Tuesday]
CSAD Theme:
As of now there is no announcement regarding the theme of Cloves Syndrome Awareness Day.
What is Cloves Syndrome?
Cloves Syndrome stands for Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevi, and Scoliosis / Skeletal / Syndactyly syndrome. It is a rare genetic disorder which causes enlargement of fatty tissues, vascular malformations, and other skin and skeletal abnormalities. It affects multiple systems in the body and can cause significant health challenges for affected individuals.
One gene termed PIK3CA mutation is the main cause of Cloves. During a baby’s development in the womb, these mutations occur on their own. There are currently no recognised risk factors that could increase or decrease the possibility of these mutations.
History:
Cloves Syndrome causes deformities due to the overgrowth of tissues. This rare genetic condition impacts the physical and emotional well-being of an individual. So, in 2010 CLOVES Syndrome Community (CSC) established CSAD. The day is observed on August 3 worldwide. It aims to initiate campaigns, promote awareness and awareness to curb the challenges and stand in solidarity with those suffering from Cloves Syndrome.
Cloves Syndrome Awareness Day: Objectives
The two main objectives of Clove Syndrome Awareness Day:
- To raise knowledge and understanding of Clove Syndrome, a rare genetic condition characterised by tissue overgrowth and difficulties connected with it.
- And to promote research projects targeted at expanding diagnosis, treatment choices, and eventually improving the quality of life for those living with this disorder, while fostering support for impacted people and their families.
Cloves Syndrome Awareness Day: Significance
Cloves Syndrome Awareness Day holds great significance for spreading awareness about the rare disease in different ways:
- Educational workshops are organised to shed light on the rare disease
- Online campaigns to increase public awareness for early diagnosis and treatment
- Drive community meetings to reduce stigma and show empathy towards patients of Cloves syndrome
- Virtual support groups create a sense of solidarity
- Media coverage to encourage fundraising efforts
Also, the day advocates for better research and medical advancements.
Early signs and symptoms of Cloves Syndrome
- Delayed development of the body. Children with Cloves Syndrome often take more time to reach developmental milestones than other children of the same age
- They have an intellectual disability
- They may exhibit behavioural problems such as aggression or self-harming behaviour
- Seizures
- Eating disorders and feeding difficulties
If parents or caregivers notice any of these signs or symptoms in their child, they are advised to contact the doctor for further evaluation
Interesting Facts:
- There are only 200 identified cases of Cloves syndrome worldwide
- The colour blue marks solidarity with Cloves syndrome
- Cloves Syndrome Awareness Day was founded in 2010
- 50% patients of with rare genetic disorders include children
- It may take another 5 years to find the right diagnosis method
In conclusion, Cloves Syndrome Awareness Day is observed on August 3 every year. It aims to foster understanding, extend support, and solidarity to promote research and empower affected individuals and their families.