Author: Riikka Tupala

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Down Syndrome Day – 21st March

“With us not for us”

About Down syndrome

Down syndrome or Trysomy 21 is a condition in which a person has an extra 21st chromosome in each body cell.

A very small percentage of people with Down syndrome have an extra copy of chromosome 21 in only some of the body’s cells and this particular condition is called mosaic Down syndrome.

Chromosome are “packages” of genes and information contained in all the body cells. They carry information, DNA, that controls what you look like and how your body and brain work and develop.

Around 1 in 700/800 babies are born with this syndrome; it occurs naturally, there is no known cause, it is a random event. Although women of any age can have a child with Down syndrome, one factor that is known to increase the risk is the age of the mother. In fact, women ages 35 and older are more likely to have a baby with Down syndrome.

Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues, the symptoms are different in each person, and they may have different problems at different times in their lives.

People with Down syndrome often have a characteristic facial appearance that includes a flattened appearance to the face, outside corners of the eyes that point upward (upslanting palpebral fissures), small ears, a short neck, and a tongue that tends to stick out of the mouth. Many have small hands and feet and a single crease across the palms of the hands. About half of all affected children are born with a heart defect.

Their speech and language develop later and more slowly than in children without Down syndrome. Additionally, speech may be also difficult to understand.

Behavioral issues can include attention problems, obsessive/compulsive behavior, and stubbornness or tantrums. A small percentage of people with Down syndrome are also diagnosed with developmental conditions called autism spectrum disorders, which affect communication and social interaction. In addition, they often experience a gradual decline in thinking ability (cognition) as they age, usually starting around age 50. In fact down syndrome is associated with an increased risk of developing Alzheimer disease, a brain disorder that results in a gradual loss of memory, judgment, and ability to function. Approximately half of adults with Down syndrome develop Alzheimer disease.

What is World Down Syndrome Day – WDSD

World Down syndrome Day (WDSD) is a global awareness day which has been officially observed by the United Nations since 2012. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

The message of this year campaign “With Us Not For Us” is key to Human rights-based approach to disability. The campaign is committed to moving on from the outdated charity model of disability, where people were treated as objects of charity, deserving of pity and relying on others for support. This approach views people with disabilities as having the right to be treated fairly and have the same opportunities as everyone else, working WITH others to improve their lives.

The United Nations Convention on the Rights of Persons with Disabilities calls for full and effective participation of persons with disabilities but many organisations still exclude people with Down syndrome from taking part in their work. They take decisions For them not With them. All around the world, people with Down syndrome are treated badly. They are denied education, good health care, the chance to work and earn their own money and they are not allowed to make decisions about their own lives: their voices are not heard!

So on the 21st of March this organisation tries to create a single global voice advocating for the rights, inclusion and well being of people with Down Syndrome.

The Lots Of Socks Campaign

People around the world since 2013 are wearing colourful or striking mismatched socks to raise awareness for World Down Syndrome Day on the 21st of March. On this day, two different socks are worn to celebrate human uniqueness. Socks were selected because it’s an easy way to get people involved.

The aim of the challenge is to spread awareness about Down Syndrome, sparking a conversation with people who don’t know about this particular day and asks about the socks.

The acceptance of people with Down Syndrome by society and their opportunity to be able to meaningfully partecipate in decision-making issues affecting their lives is still not a matter of course. It is thanks to sharing information and a positive example from personal experience that each of us can break down prejudices, help others become equal members of society, and realise their dreams – to live a full life.

All you have to do is put on two mismatched socks on 21st March, take a photo, and share it on your social media with the hashtag #SockChallenge.

In this way we can spread understanding and respect for diversity together.

Please share your photos and videos on Facebook, Twitter, Instagram and TikTok using the official WDSD hashtags in your social media posts to help spread awareness this World Down Syndrome Day– #LotsOfSocks#WorldDownSyndromeDay #WithUsNotForUs #WDSD2023 #ShareTheJourney

There is also a film called “chromosomes R us” which is a short film by actors with Down syndrome explaining how trisomy 21 occurs if anyone is interested to know more about it!

https://medlineplus.gov/genetics/condition/down-syndrome/#frequency

https://www.worlddownsyndromeday.org/what-is-down-syndrome

https://pubmed.ncbi.nlm.nih.gov/32029743/

https://medlineplus.gov/genetics/condition/down-syndrome/#description

https://sockschallenge.com

https://www.foxnews.com/lifestyle/world-down-syndrome-day-sock-tradition

https://www.awarenessdays.com/awareness-days-calendar/world-down-syndrome-day-2023/

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Mental health and wellbeing (part 2/2)

Written by nursing student Tatenda Malan

This blog post is based on a podcast episode of Mental health and wellbeing made by Service centre Soteekki and is published on September 5th, 2021. Podcast is part of the StudyWell-project, by the students for the students and staff of SAMK. You can find original Podcast here (link) www.campusmowe.fi/podcast. In this episode special quest Katja Warwick-Smith was interviewed by physiotherapy student Andrew Warwick-Smith. This text includes direct quotations from the interview just to make sure the meaning is not being changed or misunderstood.

Katja Warwick-Smith is the Assistant Executive Director of Clinical Service Development Mental Health with Hamad Medical Corporation (HMC), Doha, Qatar. Katja Warwick-Smith is a mental health expert with many years of experience in Finland, UK and Qatar. Currently, She leads HMC’s virtual mental health services, including the National Mental Health Helpline.

None of this is rocket science. Probably nothing new. However, we all need reminders on regular basis, because we’re human beings and life does get very busy. When we talk about well-being, it really is about things that bring a smile on our face, distracts our mind and is sustainable and those are kind of the core elements. We all have our unique preferences. What gives us that sense of wellbeing and happiness. Here are a couple of coping strategies that have a lot of evidence behind them.

Stay connected

According to a recent study, social networks are number one protective factor against depression. So, keep you your social network close. Improve your social connections and connectedness.

When we talk about detaching from our networks, it doesn’t happen overnight. We’re really busy we’re tired working long hours, whatever it might be. Looking up to the children, whatever you know, the friend calls and says, “let’s go for a coffee”, we might say, “Oh to be honest, I’m really tired. I just want to watch a movie or something”.

It’s okay, every now and then but just pay attention that you know all of a sudden you don’t realize that “oops! I haven’t actually seen anyone for weeks and weeks”. When you’re on your own and you have troubles and things in your mind, you ruminate on them. You keep thinking about them and they actually grow much bigger than what they really are.

When we are with friends, we never mind, distract, also speak, ventilate get it out of the system, and that can help to put things into perspective. Hopefully that friend will also help. You laugh a little bit because laughter actually releases the happy hormones that will tackle your stress hormones and it helps you to clear your mind from whatever it is that has been troubling you. It’s really important to stay connected.

Exercise

My personal, absolute favourite, coping strategy is exercise. I’m sure everyone has heard this one before, but the benefits are really evident in literature. You know when you have stress that peaks up, your body releases the stress hormones. In other words, you go to flight or fight mode, and that is what makes you stronger and faster and better at decision making, but those stress hormones pretty much impact every major organ in your body.

When we exercise, not only does it burn out those stress hormones at the time, in other words, helping your muscles to relax and helping you to feel that sense of well-being. But the evidence clearly shows that when you exercise regularly the next time your stress peaks, your body releases, less stress hormones, and that is actually a really important protective fact. Because um, you know, if you think about with the stress hormones your bowels and blood pressure go up, but if you’re on that peak all the time, you risk a cardiovascular event.

Eventually, if you have that hyped up a situation all the time, your body is releasing more glucose to give you more strength. Well, eventually, you risk diabetes. Every single organ is affected and hence exercise not only helps you in that immediate situation, but also protects you later on thinking going forward and with well-being. Nothing is about perfectionism. You don’t have to pay a lot of money for a gym. You never wanted to go to run around the house, throw the kids around that will make all of you laugh a lot. You know dance in the kitchen when you’re cooking, anything that breaks a little bit of a sweat makes you feel good and puts that smile on your face, that is, about well-being and making sure that it’s sustainable.

Mindfulness

If you don’t have time for that, do something that you have time for. Another thing is about taking notice. This is known as mindfulness. It is very popular stress management strategy. There are all sorts of apps, very good websites and trustworthy ones. It’s all about being present in the moment and again it’s about clearing all those troubles out of your mind and paying attention to where you are.

When you go for the walk in that park, don’t think about what happened at work today or what will happen tomorrow? Look around! What are people wearing? How green is the grass. What colour is the sky? It’s all about being present, and psychologists call it everyday mindfulness.

When you brush your teeth, don’t think about anything else, except which tooth have I brushed. Did I do it well? I need to do a little bit more there. It’s about being present and focusing on whatever it is that we’re doing, and these are the moments that help us zero in.

In other words, we have peaked with our stress and we talk about accumulative stress throughout the day when we regularly take moments to bring it down. The total stress doesn’t build up to quite so high, which again protects us both psychologically and physically.

Another really well evident strategy is about learning and again with well-being. It’s not about your master’s or PhD. It’s about something little. First of all, focus your mind because you can’t learn if you don’t concentrate. Furthermore, it can give you a great sense of achievement when you actually do learn that you know one word in a different language per day or something manageable.

One really good thing to keep in mind is kindness. You know giving to others saying, thank you, smiling at a stranger. You know it makes us feel good when we see that response, and we have just given someone else, a very positive message.

Diet

you just can’t talk about well-being without mentioning these one of them is diet. wellbeing is not about perfection. Go crazy, every now and then with the takeaway, but make sure you have some healthy structures in your diet, and one really important thing to remember is that ongoing stress brings down our immune system. We need that healthy diet to push it up. Of course, you know if we have heavy meals and so on, we feel tired and bloated and that’s not a sense of wellbeing either. So little things like thinking about have you had your veggies and fruits today can make a big difference.

Sleep

If we have a heavy meal late in the evening that can affect the quality of our sleep. Sleep is the final point. Rest is the time when our body and our mind charge the batteries. I know we all get busy, don’t always get enough sleep

It really is about those conscious choices, and you know again, nobody can do it for us. We have to go through this process of stop self-check. How am I doing am I getting worked up? Where am i on that continuum of feeling on top of the world, or feeling that I’m overloaded and overwhelmed when we recognize something is going on? What’s triggering this, what’s causing me to feel this way?

If you can deal with it deal with it, take a few hours just to sort it out, and that stress is gone. If you can’t resolve it, refocus your efforts to managing actively that stress that it’s causing and when you accept that okay, you have something you can’t change, you tell yourself, I can’t change it at the moment, but it will be okay, don’t know when, but it will get better and that’s a really powerful little psychological threat.