Thursday, 28 February 2019

Rare Disease Day 2019


Today is Rare Disease Day ® and my rare illnesses are Functional Neurological Disorder and Hemiplegic Migraines

The aim of Rare Disease Day ® is to raise awareness of rare illnesses and the impact it has on individual's lives and the need for research to help those living with rare conditions and to eventually one day find a cure.

1 in 20 people will live with a rare disease at some point in their live (Rare Disease Day ®) and despite that statistic there is no cure for most rare illnesses and many people also go undiagnosed or it will take them years of difficulty as well as delays to get the right diagnosis often leaving individual's feeling isolated and confused.

The first Rare Disease Day ® took place on the 29th February 2007 a 'rare' date and since then Rare Disease Day ® has taken place on the last day of February - a month which has a 'rare' amount of days.

So, what is a 'rare' illness?

In Europe the definition of a rare disease is that it affects less and 1 in 2,000 people.
There are 6,00 existing rare illnesses.
80% of rare illnesses have an identified genetic origin. Other rarer illness may come as a result of infection, allergies or be environmental. There are also rare cancers, disorders of the immune system and birth defects.
25% of rare diseases have a molecular basis.
50-75% of rare illnesses affect children.
- Rare Disease Day ® 
- Great Ormond Street Hospital

Some well known rare illnesses include Cystic Fibrosis and Muscular Dystrophy.

The term 'medical zebra' is given to those with a rare illness as doctor's are taught "when you hear hoofbeats, think horses not zebra's"; so to look for the most common cause first behind a person's symptoms. But just like zebra's, rare illnesses do exist, and just like a zebra's stripes we are each unique and no two people, even with the same illness will be the same.

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