Trisomy Awareness Month is observed in March. It is a congenital disorder that occurs when there are three copies of a chromosome instead of the typical two. Down syndrome is one of the most well-known manifestations of trisomy, where chromosome 21 is copied. Trisomy 16, with chromosome 16 getting copied thrice, is the most commonly occurring trisomy during pregnancy. In modern times, as we learn to celebrate peoples of all kinds, it is wonderful to see adults with trisomy live full lives. They are accepted in the workforce too.
History of Trisomy Awareness Month
March is chosen as the Trisomy Awareness Month in the U.S. because it is the third month of the year, which correlates to the three copies of chromosomes that characterize the disorder. There are many organizations in the U.S. that take the lead in spreading awareness about different kinds of trisomy. SOFT, or Support Organization for Trisomy, is a leading advocate and awareness creator for specific kinds of trisomy like 18 and 13. They hold annual trisomy conferences for parents and families with affected children. The Eunice Kennedy Shriver National Institute of Child Health and Human Development (N.I.C.H.D.) is the federal government agency that also joins in to spread awareness of trisomy this month. It has a dedicated center to research intellectual and developmental disabilities.
The objective behind observing such a month is not only to raise awareness about the condition among the public, but also to recognize and celebrate the lives of those children living with trisomy, their parents, and caregivers. Some forms of trisomy such as 18 and 13 can greatly affect the lifespan of a newborn, and their chances of surviving beyond the first year are low. Trisomy Awareness Month is also a great time for fundraising and networking activities that can further the state of research, treatment, and care for children with trisomy. It is also a time to raise awareness about the existence of preventive or diagnostic tools for aspiring parents to get a better sense of the risks associated with their pregnancy.
Trisomy Awareness Month timeline
Dr. Down is the first physician to describe Down syndrome in terms of its characteristics.
Children with down syndrome have a life expectancy of only 12 years.
The rising field of cytogenetic helps to genetically describe Down, Klinefelter, and Turner syndromes.
SOFT, a non-profit dedicated to Trisomy 18 and 13, is founded.
Trisomy Awareness Month FAQs
Is trisomy hereditary?
No, trisomy is not considered a hereditary disorder, and it manifests due to irregular cell division during the initial phases of reproduction.
Is it possible to screen for trisomy during pregnancy?
The risk of giving birth to a baby with trisomy increases with the mother’s age, or if she has already delivered a baby with trisomy. It is possible to screen for risks of the baby developing trisomies 21, 18, 13, X, and Y using Non-Invasive Prenatal Testing or NIPT early on in the pregnancy.
What kinds of treatment are available for adults with down syndrome?
The Trisomy 21 Program is one of the few programs at Children’s Hospital that treats patients beyond age 18 and into old age. There are care homes for these adults as well.
How To Observe Trisomy Awareness Month
Share a resource
There are resources for caregivers looking after children with trisomy on the sites of organizations such as SOFT and N.I.C.H.D. For instance, SOFT has resources for physiotherapy, trust-building, managing specific environmental conditions such as light, and internal side effects such as epilepsy. If you know a caregiver for a child diagnosed with trisomy, you can share some useful resources with them, even if they may have come across it already.
Volunteer your time
Another way to help out is to find a local charity that supports the cause, and ask them if you can volunteer your skills in any way. This could include managing their digital and social media presence, taking care of administration, or even working with families, if you are equipped for it.
If you have a great network of individuals and organizations looking to pitch in for charitable causes, you should consider using your skills to raise funds for organizations working with trisomy. This can include research organizations, or even families looking for some support in treatment or care.
5 Fascinating Facts About Trisomy
Down syndrome was considered a race
Dr. John Langdon Down described people with Down syndrome as ‘Mongoloids’ who shared racial features with Mongolians.
Trisomy sometimes gets better with age
Although the infant mortality of Trisomy 18 and 13 is very high, there is a 60% chance of the child living beyond five years of age if they survive the critical first year.
Trisomy can be partial
Full trisomy occurs only when the entire chromosome has been copied. If only a part has been copied, it is partial trisomy.
Trisomy 16 fetuses usually miscarry
Even though it’s the most common trisomy among pregnant women, they frequently cause miscarriages.
Autosomal trisomy is worse
Autosomal trisomy refers to copies of non-sex chromosomes, which lead to more severe complications.
Why Trisomy Awareness Month is Important
It helps us understand trisomy
Many of us may have heard of Down syndrome or other birth disorders, but we may not know that there is a common link between many such disorders based on an extra chromosome. We may not even understand all the types and risks that each involves. This month therefore truly raises our awareness of this family of disorders.
It’s a chance to reach out to caregivers
Whether we know someone caring for a child with trisomy, or we decide to volunteer, this is a chance for us to understand the perspective of parents having to deal with the imminent death of their children. This is an especially trying situation to be in, and parents find different ways to cope with it and do their best for their children.
It’s a reminder of human strength and frailty
Whether we identify as a person with a disability or not, it takes great strength of spirit to deal with this challenging condition. At the same time, it is a reminder that many accidents of birth are out of our control, and that our human existence is precarious.
Trisomy Awareness Month dates