By understanding the needs of those with medical conditions that are unusual— needs specific consideration. An understanding, commitment and drive to be inclusive. Knowing where to reach out for support. For both exercise participants and those delivering sessions.
Becoming an advocate for Rare Diseases will attract more people to your session. Not just with a Rare Disease - but those who recognise that you are going that extra step to show compassion and understanding. The participant may be hesitant/nervous so communication will be a factor.
Why is this so important?
Sport/exercise benefits can be seen through Valuable Therapy directly from the Rare disease team. Charlotte who lives with Osteogenesis Imperfecta uses running to help her manage her condition. She shares her view:
‘‘The uniqueness of your condition and the fact that most people (including sometimes the medical profession) have never heard of it, means you often ‘stand out from the crowd’. And this comes at a time when you really need to be part of a crowd. A crowd who understands how you feel and the specific challenges you face’’.
Understandably this can leave people with feelings of isolation and loneliness. Unable to reach out. She continues:
‘When you have a rare disease, quite often the very community structures that are supposed to be there to help you, can end up turning their backs on you because they don’t understand the disease, or how to cope with it’’.
Starting Out - where do I begin?
The official FAQ page on The Rare Disease Day website is a good starting point. The National Organisation For Rare Disorders (NORD) offers a database of approximately 1,300 reports on specific rare diseases written in patient-friendly language on its website.
Ask questions!
Identify what adjustments need to be made prior to a session
Check-in regularly but be discreet
Be honest and develop trust
Not yet worked with someone with a rare disease?
Follow the social media apps and learn. Contact local support groups and try to advertise your passion to help those with rare conditions to participate on the same level as your other participants/athletes.
Valuable Therapy also contains the stories of Matteo who enjoys football and Alessandro from Italy who is a golfer. More detail about Charlotte's running can also be accessed. See the impact you could make. What you could offer.
Summary
Exercise with Chronic Disease by the Mayo Clinic talks you through how to approach exercise with some well-known conditions such as asthma, dementia, diabetes and arthritis. This will give a good grounding for development and knowledge. In many cases, the same benefits and recommendations will apply to these conditions.
Building trust is vital. Good communication, listening and observing will lead to meaningful interaction and success —developing good goal-setting. The same as you would apply to any other participant. Everyone is unique. All will have specific needs. Some just take a bit more time and effort. They could also be the most rewarding.
*Please remember that these blogs are very real to us. We are on the same journey. It’s tough, slow and frustrating. Most of the Scenarios we face ourselves. Sometimes we find what we print useful. Other times we don’t. It’s included because everyone's journey is different. We have passionate perseverance to help others. To dispose of all content would be a waste and a disservice to our readers.
The Mayo Clinic - Exercise and Chronic Disease
Katy Baker - The Mighty - Blog Page
Rare Disease Day
Rare Disease Day - Sport & Exercise can be a valuable therapy for rare diseases
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