Rare Disease Day 2015
February 28th is Rare Disease Day. As a person who was diagnosed with a rare disease close to 40 years ago, this day is very important to me and to thousands of other Canadians impacted by one of the over 150 neuromuscular disorders supported by Muscular Dystrophy Canada. At the age of 10 months, I was diagnosed with Spinal Muscular Atrophy Type 1 (to be re-diagnosed as Type 2 later in life). SMA is the world’s leading cause of infantile death; I bet you didn’t know that! Forty years later, I’m still kicking and have no plans to slow down. This is one of many reasons why days such as this, to raise awareness and provide education, are so vital to our health, well being and ability to be full and active participants in our communities.
Thanks to the work of Muscular Dystrophy Canada staff, volunteers, healthcare professionals, family members, researchers, caregivers and Fire Fighters, in the areas of support, education, advocacy, financial assistance, information delivery and medical research, people living with neuromuscular disorders are living longer, more enriched lives.
We all face challenges in our daily lives, but some of us face more than others. Days like this which provide education and awareness, help to build knowledge within the general community and the community of those who are impacted by rare diseases and are key to promoting the importance of supporting organizations and people who are impacted, as well as maintaining healthy lifestyles and providing strategies to enhance independence!
Here are just a few examples why I feel Rare Disease Day is so important:
- People are living longer…… this has a huge impact on our healthcare and social service sectors. People are being faced with illnesses that come along with aging. Having a disability complicates this and our healthcare providers need to be able to think outside the box and work in partnership with families and organizations such as Muscular Dystrophy Canada to develop strategies to manage these illnesses. I was hospitalized for six weeks this past summer and if it wasn’t for my knowledge of how to take care of myself, I’m certain that my stay would have been much longer and my recovery would have been significantly more challenging. Not only did I manage my recovery more effectively because of my knowledge, I also had a huge impact on the knowledge and understanding of the healthcare professionals who supported me during this difficult time.
- Breath is vital to life…… Many professionals are unfamiliar with the challenges associated with respiratory care and neuromuscular disorders. People who are impacted, their family members/caregivers and professionals need to be familiar with respiratory health protocols. I personally have known several people who have gone into comas and worse because of inappropriate respiratory interventions. Check out Muscular Dystrophy Canada’s Guide to Respiratory Care for Neuromuscular Disorders.
- People with disabilities are more than just their wheelchair….. Community members at large need to see the person first and what they have to offer. If this happens, people with a variety of challenges will be more included in their communities; they can work, go to school, volunteer and even hang out at a local night club if they wish. People just don’t understand what it takes to include people (the cost is actually minimal). For example, I was recently married and am able to have a full and normal relationship, including all aspects (physical, emotional, spiritual and financial). I also work full time and volunteer in various community roles. Not only is highlighting these successes and obstacles important to the community at large, but also to people who are affected by disability in order to show them that their goals are achievable.
- It is important to support smaller non profit and charitable organizations….. We all know someone who is impacted by one of the diseases that has high prevalence in our country and tend to support those same organizations over and over again. These organizations should continue to be supported as they do great work, but it is my wish that people support smaller organizations as a percentage of their giving. Every little bit helps and small organizations can deliver a huge bang for your buck, whether it be in research or service delivery.
- We all need to work together….. As our diseases are so rare, we need to work hand in hand to provide direct peer support, networking opportunities, raise awareness, educate each other and our community and raise funds. To learn more about how you can help yourself while helping others, visit www.muscle.ca
As you can see, there is so much that we can all do to raise awareness of rare disorders. Take action today and help build a supportive community around you!
Jeff Sparks is the National Director of Volunteer Engagement and Organizational Development with Muscular Dystrophy Canada. He is a quadriplegic and relies on 24 hour attendant care, which he manages himself, for all physical activities of daily living. Diagnosed at 10 months of age with Spinal Muscular Atrophy Type 2, he was not supposed to live past the age of 2 years old. 39 years later, there is no slowing him down.