Image from @myraredisease
Supporting a family member or friend can be difficult. Taking time to listen. Including them in decisions and not assuming — adapting and doing some research — without judgement or expectations. Simple techniques -- a big impact.
The Rare Disease Day movement says that over 300 million people around the world are affected. 3.5-5.9% of the population. 72% of conditions are genetic.
What challenges do people face?
Difficulty in obtaining an accurate diagnosis — followed by limited treatment options. Often little research is taking place. People can become isolated. Forced to pay for or raise money to access the care they need because of a lack of medical professionals who know and understand these illnesses.
The 28 of February is an opportunity for patients to:
Share stories.
Raise awareness.
Fight for equality.
Light up the world's most significant buildings in the traditional Rare Disease colours.
The creator of the My Rare Disease Podcast Katy Baker was diagnosed with a rare disease at 10 weeks old. Using platforms including Spotify and Apple, Baker produces regular podcasts. Her interviews focus on the question; ‘What would you like others without a rare disease to know?’ These run alongside a series of blogs and thoughts on The Mighty.
How can I help someone with a rare disease?
Simple — read and digest the chart below. Put plans in place. Communicate on level terms. Be supportive but not overwhelming. Take your time. Ask questions. Don’t pressurise. Distractions are great. Having something fun can help. Understand triggers and symptoms.
Something Baker makes very clear is to remember that the person you are connecting with is not defined by their condition. Inclusivity may be more difficult. Knowing boundaries and asking for help when needed are also contributing factors.
Raising Awareness
You don’t have to know someone with a rare disease to help the community. Health charities join together such as The Pituitary Foundation and The Addisons Disease Self-Help Group. All represent rare conditions of which there are over 7000.
Subscribe to the Rare Disease Day Official Newsletter
Become an activist
The official downloads page has plenty of advice and social media resources.
Summary
As soon as one year passes the countdown begins to the next one. Through patient-led experiences—families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives and the general public participate. Taking action today for this vulnerable group of people. The work doesn’t stop. The social media channels keep rolling. Campaigning continues —building momentum. Join the groups. Be a part of something special.
The Rare Disease Day - FAQ Page
Rare Disease Day Newsletter
Rare Disease Day Official Downloads
Katy Baker on The Mighty
*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.
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