Cloves Syndrome Awareness Day is every year on August 3. Today, communities come together to share information and resources on this rare, congenital disease. There are only 200 identified Cloves cases the world over, which means inadequate funds and research. Families affected have no access to effective treatment options; without more awareness, they may never get it. Cloves Syndrome Awareness Day is a global observance. It calls every person to action and hopes to inspire community support.
History of Cloves Syndrome Awareness Day
Cloves Syndrome is a rare disorder that affects infants at birth. There are fewer than 200 cases of Clove cases reported worldwide to date. This congenital disease is characterized by abnormalities in the bone, joints, or blood vessels.
Cloves Syndrome occurs due to mutations in the PIK3CA gene. A child’s long-term health depends on the severity of symptoms and their age. The sooner doctors can diagnose symptoms, the more effective treatment can be.
Early detection is no easy feat, however. Symptoms differ vastly from one child to the next. What could be worse? Even though the disorder exists at birth, it may not be easy to identify straight away.
Generally, parents must watch for anything that seems out of the ordinary, especially fatty masses on the back, belly, or flank. Take care to check for large gaps between the big toe and other toes; most Cloves patients exhibit this symptom. Other symptoms can include wart-like bumps, issues with the spine, limb abnormalities, or enlarged veins. So far, there’s no evidence to suggest predispositions to this particular gene mutation. It spontaneously occurs inside a mother’s womb while the baby is still developing.
There’s nothing more distressing than knowing there’s no way to prevent disease, particularly when it involves infants. Cloves Syndrome Awareness Week aims to increase general awareness. Education and empathy can lead to better research – therefore, better treatment for Cloves patients. Cloves Syndrome Awareness Day hopes to build community support and raise funds for those who need treatment. Everyone should have access to the proper course of treatment and live their best life. Speak about it. Share your stories. The goal is to get the word out as far as possible.
Cloves Syndrome Awareness Day timeline
Hermann Friedberg, a German physician, publishes a case report describing a “gigantism of the right lower limb.”
Saap and colleagues examine a set of seven patients and first identify the spectrum of Cloves symptoms.
In tune with the spirit of February 29, the Council of National Alliances and EURORDIS mark the first Rare Disease Day.
Researchers in Spain discover that patients respond positively to oral rapamycin treatment.
Cloves Syndrome Awareness Day FAQs
What does Cloves syndrome stand for?
Cloves syndrome is a rare genetic disorder. CLOVES is an acronym that stands for a combination of abnormalities at birth: Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevis, Spinal/Skeletal Anomalies/Scoliosis.
What is the life expectancy of someone with Cloves syndrome?
A Cloves patient’s quality of life depends on the symptoms or combination of symptoms. Life expectancy varies accordingly as well.
How many people in the world have Cloves Syndrome?
The syndrome affects about 150 people worldwide.
How to Observe Cloves Syndrome Awareness Day
Show solidarity by wearing something green today. The color is associated with Cloves and will let people know that they’re not alone in the fight.
Get the word out
Post information on social media with details on how Cloves can impact patients. The more people you can reach, the better.
If you’re comfortable with it, share your personal experiences battling Cloves. Write a social media post or a newspaper article so everyone can be more informed.
5 Facts About Rare Diseases That Will Blow Your Mind
What constitutes as “rare”
The US considers a disease rare if it affects less than 200,000 people.
Children are the most affected
Children make up 50% of patients suffering from rare diseases.
Diagnosis takes a long time
Since these diseases rarely occur, it may take an average of five years for a correct diagnosis.
Treatments: as rare as the disease
Only 5% of rare diseases have effective drug research and treatments.
Some cancers occur so infrequently that they fall in the rare category.
Why Cloves Syndrome Awareness Day is Important
Everyone comes together
Cloves Awareness Day encourages a sense of community. The day reminds us to help people in need.
It builds compassion and empathy
We don’t need to go through something ourselves to feel people’s pain. The idea behind today is to acknowledge the challenges and to amplify the voices and needs of Cloves patients.
The potential to save lives
An article, flyer, or social media post could help families recognize symptoms they haven’t before. Writing to lawmakers about Cloves could lead to a ripple effect in legislation. When the objective is saving lives, every little act counts.
Cloves Syndrome Awareness Day dates