Rare Disease Day: An Interview with an expert

Did you know its Rare Disease Day on 28 February? And did you know that there are multiple charities across Canada that are dedicated to transforming the lives of those living with rare disease? With around 1 in 12 Canadians affected by a rare disorder, we spoke to Emily Walsh from Mesothelioma.com to find out more about Rare Disease Day, and why she’s passionate about spreading awareness around the causes of mesothelioma.

Hi Emily! Can you tell us a little bit about yourself, and what you do?

As a rare disease advocate, I help shed light on a very important community. Mesothelioma cancer is rare in that it affects less than 200,000 people at any given time. In the United States, approximately 3,000 new cases of mesothelioma will be diagnosed this year. I spend my day-to-day working to raise awareness on asbestos exposure and the dangers this material presents in everyday life. Asbestos is a well-known human carcinogen that has been banned from nearly 60 countries, but is currently legal in the United States. Mesothelioma.com works tirelessly to seek a global ban on this toxin in the hopes that mesothelioma cases will cease to exist in the future.

What is Rare Disease Day? And why is it so important for organizations like yours?

Rare Disease Day is such an important day for our organization and many other institutions like ours. It’s on the last day of February, and is designed to improve access to proper medications and medical attention to those who battle uncommon and underfunded illnesses. Every year the Rare Disease Day organization enacts a specific theme, this year’s is bridging health and social care. There are over 6,000 diseases that fall into the rare category. Some 300 million people worldwide are affected each day, which presents challenges in providing enough care for every person affected by rare disease. Often times families become heavily involved, having to leave their full-time jobs, of which ultimately results in financial hardships over time.

How can people use Rare Disease Day as an opportunity to make an impact?

#ShowYourRare! The Rare Disease Day organization has a running campaign called Show Your Rare. It encourages people to paint their faces with beautiful colours to show off the differences in this world, and to show support for the rare disease community.

Another opportunity to make an impact on this day is to host an event! Big or small, getting the word out for this community can make a world of difference. While many illnesses and diseases have their own specific awareness days, weeks or months, this day brings a community together and naturally causes more people to show interest and educate themselves on different types of rare disease.

What does working at Mesothelioma.com involve?

I have had wonderful opportunities to work in many many different spaces and communities. Anything from DIY home renovation safety, to immunotherapy and advancements in cancer treatments, even how artificial intelligence is changing the way that we detect cancer. I also have the honour of working with a 13-year survivor, Heather Von St. James who now uses her story to motivate others in helping find a cure. She has become an advocate who preaches the dangers of asbestos when exposed. Heather was diagnosed with mesothelioma at a staggering young age, just 36, and attributes her diagnosis to receiving second hand asbestos exposure when she often sat on her father’s lap as an adolescent. She was given only 15 months to live, but after a life changing surgery where half her lung was removed, she successfully recovered. She, her husband Cameron and beautiful daughter, live very happily –  determined to be a constant beacon of hope for mesothelioma patients everywhere.

What is the one point you wish everyone knew and understood about rare diseases?

The number one thing I would love to instill in the community is that it doesn’t take much to make a difference. 1 in 20 people will live with a rare disease at some point in their life. Taking that statistic into account, you’ve probably met a handful of these people without even knowing it. Making small actions that show you’re an ally will go a long way in their spirits.

Are there any other causes or charities that you support?

Aside from doing my part as the Director of Community Outreach for the Mesothelioma Cancer Alliance, I am very active in the Alzheimer’s Association community. I’ve been directly impacted losing close family and friends to this terrible disease. Each year, I walk in honour of my courageous Grandmother with my family. It’s so important to find a charity that means something to you. Being a voice and a leader to seek change is a powerful tool that we all have as members of society. I’ve also participated in the Light the Night walk since I was 8 years old in support of a friend with childhood leukemia. He tirelessly fought his battle for 18 years taking his last breath just days before his 21st birthday. I continue to do this walk in honour of Jack and his family.

Thank you so much for sharing your insights so passionately with us, Emily. You can give to many different Rare Disease Charities on Charitable Impact, should you wish to support this cause. Have your own story to share? Send us an email: [email protected]

If you have any questions about choosing a cause to support, or want to find out more about our services, our friendly team is here to help.