Throughout the year, we have all sorts of awareness days, commercial holidays, cultural appreciation days, religious days and annual celebratory days to appreciate almost everything. Yet throughout the year there is one day that I personally feel is hugely important: Rare Disease Day. This is a day that is close to my heart as it's a day for people like me worldwide to be heard and understood in a society where we are often overlooked. It's a day for people like me to shout from the rooftops about living a life that most couldn't possibly imagine; a day to speak out about living life with unique circumstances and the impact that has on an individual and those around them.
The Rare Disease Day website (http://www.rarediseaseday.org) states: "A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000 people at any given time." To put that into perspective, in the EU as many as 30 million people may be affected by one of over 6000 existing rare diseases.
I couldn't possibly bring awareness to every single rare condition that exists and what each entail due to the sheer amount of individual conditions involved. What I can do is share my personal experiences with rare chronic illnesses (EDS) and what you can do to support someone you know that has a rare illness or charities that support individuals. Rare conditions are not a 'one size fits all' scenario and no two people with the same condition present in the same manner. This means illnesses are often misdiagnosed due to lack of research and knowledge. This also means conditions often end up being poorly managed and troublesome to treat, so patients and their parents/carers having to become their own advocates to ensure medical needs are met in the best way possible. For most rare conditions cures do not exist.
Five things that you could do to help someone you know with a rare condition.
1) Be willing to listen to a loved one and show you are comfortable talking about their rare disease.
A crucial part of feeling supported is having your thoughts and feelings heard. Don't be afraid that you will not have the answers as listening alone can be wholly supportive. By giving your time you show a willingness to learn which can be hugely comforting.
2) Helping to empower individuals with a rare disease. To empower someone, you need to first listen to what their aspirations are, what they find difficult, what they would feel good about achieving and how they would like to be supported in their achievements. It is important to let them take the lead, but make sure they know you are happy to support them in the way they think would be most helpful.
3) Raising money for charities that support people with rare disease.
There are fantastic charities that support individuals with serious rare illnesses. Dreams Come True UK are a wonderful charity who support children and young people aged 2-21 who have serious and life limiting conditions. I was so fortunate to be supported by this wonderful team in my dream to travel and had a fantastic road trip through France to Barcelona. This was a trip that created precious memories and improved my confidence massively, as have the dreams granted of many other young people. Knowing that despite living with such a complex illness I could do a 3000 mile trip with my partner with Dream Come True's help is something we will both treasure for the rest of our lives!
Dreams Come True rely on donations to ensure they can continue fulfilling these dreams and there is a huge array of ways to fundraise which can be found on their website: http://dreamscometrue.uk.com
4) Spend time with your friend or family member without feeling offended or upset at last minute changes to plans.
Most rare chronic conditions have an impact on daily life in some way. This means that plans are often difficult to arrange in advance. This isn't laziness nor is it an unwillingness to socialize. It's frustratingly the only way to deal with chronic symptoms. This combined with last minute appointments, hospital admissions and treatments can feel like a full-time job! One thing that is crucial is for your friend to know they can cancel plans without having to explain themselves or feel guilty for doing so. It is important to continue to create the plans with your friend/family member as this is a huge support to combat the social exclusion, loneliness and guilt a chronic condition can create.
5) Help them create and complete a bucket list.
A bucket list can be a great way to bring all these points together in a practical method to support someone you care about. A bucket list can help bring a positive focus, complete dreams and wishes, build confidence, self-esteem and show that you are willing to support a friend despite their difficulties. Committing a small amount of time can mean the world and treating a friend as you would everyone else is hugely uplifting. By acting as you would with anyone else whilst keeping in mind the difficulties they face, you will be a huge help and could be the key to supporting a friend's emotional wellbeing.
For more information about Rare Disease Day make sure to check out the official website as well as charities like Dreams Come True who do such an incredible job supporting those that are rare.