For people affected by a rare neurological problem, or any rare condition in fact, the challenges they face can go far beyond the symptoms they experience.
Rare conditions often take a long time to be correctly diagnosed and getting access to the right specialists or treatment can be very difficult even once a diagnosis has been made – and this is assuming that there are specialists or treatments available for that condition.
Relevant information and support can be hard to find, and often people will have a lot of questions and concerns that they can struggle to find the answers for, or even just someone to talk to about.
These experiences can be distressing, exhausting and very isolating.
We hear all too often that people affected by these conditions can feel that they are alone, and that they have been left without the support or information that they need to manage and live with their condition.
As a charity, we strive to be there for people affected by any neurological problem.
We want those with rare or poorly understood neurological conditions to have someone to reach out to and who they can be assured will do their best to listen and support them.
Since the Brain & Spine Foundation was founded in 1992, we have seen through our Helpline, our online communities and by meeting people at events why it is so important that support and care is person-centred and that it recognises the wide-reaching impact of a long-term, rare or complex condition.
Alongside living with their symptoms, people with a rare condition can face long periods of uncertainty - whether it is whilst they wait for a diagnosis or for further tests, or to see a specialist about the results or possible treatments. Their condition can also affect their ability to work and prevent them from taking part in their everyday life, changing their role within relationships and how they see themselves as an individual.
People with rare conditions often find that it can be difficult to explain to others what it is that they are experiencing or what the prognosis may be and whether they will get better; and this can lead to a lack of understanding within those around them.
This lack of awareness or understanding can also be felt if they have an ‘invisible illness’ or ‘hidden disability’ that others may not be able to see or appreciate at a glance.
Some people may feel uncomfortable about telling others about their disability, and may keep quiet or not ask for help as a result.
In other situations, a lack of awareness can lead to others doubting them or demanding proof - such as when using accessible facilities (e.g. toilets or changing rooms) or requesting a priority seat on transport.
Through our own efforts, and in collaboration with other charities in our sector, we are working to raise awareness of the impacts of rare and complex conditions on a person’s wellbeing and quality of life. We continue to also champion the need for person-centred care at all points of contact, and to ensure those who need support are able to access information and services that are relevant and welcoming.
If you would like to know more or show your support, click the link below to find more about Rare Disease Day 2020: