Opening Statement:
For those of you who are not familiar with “Trisomy” 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, is with chromosome 16 getting copied three times, is the most commonly occurring trisomy during pregnancy. In modern times, as we learn to celebrate individuals of all kinds, most importantly those with disabilities, it is wonderful to see adults with trisomy live full lives and acceptance in the workforce and communities as well.
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
· 1866 - Dr. John Down Describes the Syndrome
Dr. Down is the first physician to describe Down syndrome in terms of its characteristics.
· 1940s - Short Lives
Children with down syndrome have a life expectancy of only 12 years.
· 1959 - Trisomy Has a Genetic Explanation
The rising field of cytogenetic helps to genetically describe Down, Klinefelter, and Turner syndromes.
· 1980 - A Dedicated Organization Is Established
SOFT, a non-profit dedicated to Trisomy 18 and 13, is founded.
Frequently Asked Questions:
1. 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.
2. 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 in the pregnancy.
3. 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 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.
· Raise Funds
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.
Interesting 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.
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 Is 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.
Closing Statement:
Whether or not any individual identifies as a person with a disability, it takes great strength and determination to deal with a challenging condition, such as Trisomy. Many accidents of birth are out of our control, and that our human existence is risky. Trisomy 16 fetuses usually miscarry and even though it’s the most common trisomy among pregnant women, the condition frequently causes miscarriages. Autosomal trisomy is worse as it refers to copies of non-sex chromosomes, which lead to more severe complications.
Source of Information: Various Google Searches
Until Next Week, Stay Safe and Well!
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