What is the 5p society?
The 5P- Society is a nonprofit, 501(c)(3) organization dedicated to providing information and support to individuals with a deletion of the short arm (p) of chromosome 5 and their families.
What is the life expectancy for people with cri du chat syndrome?
The survival for children with cri du chat is generally good. Most syndrome related deaths occur within the first year of life. Several children have lived to be over 50 years of age. Genetic counseling is recommended for affected individuals and their families.
Are there support groups for cri du chat syndrome?
The Cri Du Chat syndrome Support Group is committed to providing support for families and caregivers through a network of area families; raising awareness of Cri Du Chat Syndrome among medical professionals, parents, caregivers, and the general public; raising funds to promote and support ongoing research into the …
How many people have Cri du Chat in the US?
The disorder is believed to be very rare—only about 50-60 infants are born with Cri du Chat in the United States each year. The condition tends to affect females more often than males and is diagnosed in people of all ethnic backgrounds.
How is Cri du Chat inherited?
Is cri du chat syndrome inherited? Most cases of cri du chat syndrome are not inherited. The chromosomal deletion usually occurs as a random event during the formation of reproductive cells (eggs or sperm) or in early fetal development. People with cri du chat typically have no history of the condition in their family.
How does Cri du Chat affect the family?
Children with Cri du Chat syndrome usually have some motor delay, especially in walking. Some children walk as early as 2 years, but others can take up to 6 years because of low muscle tone. Some might never walk. Children with Cri du Chat syndrome can have mild to severe intellectual disability.
Is Cri du Chat fatal?
A small percentage of infants with cri-du-chat syndrome are born with serious organ defects (especially heart or kidney defects) or other life-threatening complications that can result in death. Most fatal complications occur before the child’s first birthday.
What is the treatment for cri du chat syndrome?
There is no cure for cri du chat syndrome. Treatment aims to stimulate the child and help them to reach their full potential and can include: physiotherapy to improve poor muscle tone. speech therapy.
What is the 5p-Society?
The 5p- Society has a volunteer Professional Advisory Board (PAB) comprised of professionals throughout the United States. The PAB oversees all research opportunities that are brought to the attention of the 5p- Society for review and approval. When a research opportunity is approved, it is then announced to the general membership.
How common is 5p-syndrome?
About The 5P- Society. 5p- Syndrome is a chromosomal deletion disorder resulting in a wide spectrum of intellectual and developmental abilities. Each year in the United States, approximately 50 to 60 children are born with 5p- Syndrome, also known as Cri du Chat Syndrome.
What are the symptoms of 5p syndrome?
Most individuals who have 5p- Syndrome have difficulty with language. Some become able to use short sentences, while others express themselves with a few basic words, gestures, or sign language. Nearly all children with 5p- Syndrome have poor muscle tone when they are young.
What is it like to have a five P minus chromosome?
The Five p minus society and all the amazing families is a much needed resource for such times. The support and friendships that have come from a missing chromosome are like no other. As I age, I have come to appreciate how my life changed from seeing the world to seeing her world and maybe that was what life was meant to experience.