Rare Disease Day – Join Together for Better Care
Caring for people with a rare disease is not only a medical responsibility, but a social one too. It goes far beyond handing out medicine, and helps those who have no recourse to medical care have as much comfort
in life as possible. Rare diseases include things such as cerebral palsy which can also include conditions such as autism, severe learning difficulties and ADHD. All of these are known to make it more difficult for your child to learn in a school environment
without extra help.
Families Provide a Majority of Care
The care provided to people who have a rare disease varies. Some are independent and live a life with minimum support
, whereas others require round the clock care to live comfortably.
For most people with a rare disease, their family steps in to provide them with care
. A key finding by Rare Disease UK showed that most patients and families affected by a rare disease were waiting far too long for a final diagnosis
. This is something that is very common in the world of SEN with parents experiencing problems getting a statement
for their child. The danger of this happening is that it can slow down your child's social and educational progression.
Tor Leak-Jones, a mother from Kidderminster is calling for support
after being diagnosed with a rare bone and skin disorder called Maffucci Syndrome. It is thought to only affect 200 people and she wants to raise awareness of the disease and raise money
to fund research.
Loneliness is a Problem
Another thing the campaign wants to address is the loneliness among those who have rare diseases
and their families. Each disease is different, and there are up to 80,000 known with around 5 newly described
in medical literature every week.
Despite this, rare diseases can affect people in the exact same way by creating isolation. Tor struggled to come to terms with her condition when she was younger as it caused her to look different from her classmates
. Despite being like everyone else on the inside, it was the outside that caused her isolation because little was known about her condition
Seeing the goal from an international prospective can reinforce hope not only for those trying to find ways to providing care for those with rare diseases but to those with the disease themselves. But, seeing it from your own personal perspective can inspire change
in your community and your loved ones who may have a rare disease.