Is it ironic that ‘I’, this ‘self’ becomes an expert of my condition by virtue of it being rare?
Is it also rare because so few must live with the emotional consequences?
Yes, personalised medicine holds great promise, but please don't forget - me: this person : I don't want to be left here.
Being that expert I may even know the ICD-10 … codes for my condition. I know the symptoms very well.
I know the 'current' evidence and may also be able to tell you about the gaps in the knowledge base. My family physician learns with me.
Supported by policy and united as a group what might citizen science deliver?
Your carer may be the expert because for you this rare disease means you cannot readily self-advocate.
We all need to know we are not alone.
If there is a role for social media here it is:
|For those people with rare diseases we have to help them unify in order to shout, wave and raise awareness. After all: WE seek global health don't we?|
Being rare is there investment in funding for research?
Must there be a market first to bring forth drugs / treatments? We know about individual motivation, whither the corporate drive - social responsibility.
My prompt and thanks!: Stu Young, Royal College of Nursing Students