A special campaign has just started in Dublin to raise awareness about rare diseases. The campaign is called 'I Am Number 17' and it aims to help people understand these illnesses better in Ireland. Seventeen brave individuals have come forward to share their stories and be a part of this campaign. They want to show that rare diseases affect many people in the country. In fact, statistics say that one in every 17 people in Ireland will experience a rare disease at some point in their life.
To spread the message, an exhibition of photographs taken by Julien Behal will be displayed at The chq Building in Dublin starting from tomorrow. These portraits capture the unique individuals and their experiences. You can also watch a video where Ciara Micks, a 22-year-old with Ehlers Danlos Syndrome, talks about why this campaign is so important.
By sharing their stories and creating this campaign, these brave individuals hope to raise awareness and understanding about rare diseases in Ireland. It's important for all of us to learn about these illnesses and support those who are affected. So, let's show our support and learn more about rare diseases together!
What is the name of the campaign that aims to raise awareness about rare diseases in Dublin?
How many individuals have come forward to share their stories and be a part of the campaign?
What do the statistics say about the occurrence of rare diseases in Ireland?
Where will the exhibition of photographs be displayed?
Who can you watch in the video talking about why the campaign is important?
Section 2
Dear Diary,
My name is Tom and I am 11 years old. I live in a small town called Trim in Ireland. Today, I want to talk to you about rare diseases in our country. Did you know that there are many kids like me who have rare diseases? It's not something we often talk about, but it's important to raise awareness and support each other.
Living with a rare disease can be challenging. I have a condition called Turner Syndrome, which affects only girls. It means that I am shorter in height and might have difficulties with certain things like learning and socializing. But you know what? That doesn't stop me from being happy and enjoying life!
There are many other rare diseases too, like Cystic Fibrosis, where people have problems with their lungs, or Muscular Dystrophy, which affects their muscles. It can be tough, but we have amazing doctors and support groups here in Ireland that help us cope and stay positive.
I am lucky to have a fantastic team of doctors who take care of me. They monitor my growth, help me with any learning difficulties, and make sure I am healthy. My parents are also very supportive and always there for me. I know I can count on them no matter what.
Sometimes, it can be hard to explain to other kids about my condition. They might not understand why I am different, but that's okay. I try to educate them and show them that we are all unique in our own ways. It's important to be kind and accepting of everyone, no matter what they may be going through.
What is the name of the child in the journal entry?
Where does the child live?
What rare disease does the child have?
What are some other examples of rare diseases mentioned?
Why is it important to be kind and accepting of others?
Section 3
Good evening, and welcome to Ireland News! Today, we bring you a special report on rare diseases in Ireland. These are medical conditions that affect a very small number of people in our country.
Did you know that there are over 6,000 different rare diseases? Many of them are genetic, which means they are caused by changes in our genes. One example is cystic fibrosis, a disease that affects the lungs and digestive system. Another rare disease is Duchenne muscular dystrophy, which causes progressive muscle weakness.
Living with a rare disease can be challenging. People affected often have difficulty getting a proper diagnosis and finding the right treatment. That's why it's important for doctors and scientists to continue researching these conditions and developing new therapies.
In Ireland, there are organizations like Rare Diseases Ireland that support individuals and families affected by rare diseases. They provide information, advocacy, and a sense of community. It's heartwarming to see how people come together to help one another.
Now, let's test your knowledge with some anagram puzzles related to rare diseases in Ireland. Can you unscramble the following words?
ALICM - (Hint: It affects the lungs and digestive system)
YIRCM - (Hint: It causes progressive muscle weakness)
GENETCI - (Hint: These diseases are caused by changes in our genes)
LOLBOMNEA - (Hint: This organization supports individuals and families affected by rare diseases in Ireland)
ITNEAIOMNRFO - (Hint: It's important for doctors and scientists to continue this to find new treatments)
Section 4
There was a true event associated with Rare Diseases in Ireland that highlighted the importance of raising awareness and support for individuals affected by these conditions. In 2017, a young boy named Liam was diagnosed with a rare genetic disorder called Duchenne muscular dystrophy (DMD).
DMD is a progressive muscle-wasting disease that primarily affects boys. It results in the loss of muscle function and mobility, leading to a significantly reduced lifespan. Liam's parents were devastated when they received the diagnosis, as they knew their son would face numerous challenges throughout his life.
Driven by their love for Liam and a desire to make a difference, Liam's parents decided to take action. They started a campaign to raise awareness about DMD and advocate for improved support and resources for individuals with rare diseases in Ireland.
Through social media and local community events, Liam's story quickly gained attention. People from all over the country were inspired by his bravery and the determination of his parents. As a result, a support network was formed, bringing together families affected by rare diseases.
What is the rare genetic disorder Liam was diagnosed with?
How does Duchenne muscular dystrophy affect individuals?
What motivated Liam's parents to take action?
How did Liam's story gain attention?
What was the outcome of the campaign initiated by Liam's parents?
