Research is the campaign theme for Rare Disease Day 2017

The Pituitary Foundation is supporting Rare Disease Day to help raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Hundreds of patient organisations all over the world are involved and we work together to show that collectively rare diseases are not rare.Rdd Logo Large

The campaign theme this year is research. Therefore, The Foundation wants to share some of the findings from one of our own recent research projects. This piece of research focused on finding out more about the impact of rare pituitary conditions on health, employment, personal relationships, wellbeing and day to day life.

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Some of our key findings included;

  • 66% said they were not told enough about their condition when first diagnosed
  • 54% reported that they were not told enough about their condition before treatment
  • On average people waited between 4 and 5 years for a diagnosis to be reached
  • 57% of people were diagnosed after 1 – 6 visits to their GP. 20% were diagnosed after between 7 and 15 visits and for 22% it took over 16 visits
  • 75% told us they had experienced anxiety or depression as a result of their illness
  • 62% told us they experienced reduced social contact
  • 74% told us they have extreme fatigue that limits their activities
  • 84% told us they used information from The Pituitary Foundation the help them ask questions of their healthcare team
  • 58% told us their pituitary condition had resulted in reduced fertility or infertility
  • 75% said they had experienced changes to their appearance
  • 77% told us they have an increase in susceptibilities to fluctuations of mood

The Pituitary Foundation helps people access the correct information about their illness, it aims to give them a sense of belonging, it helps them to meet likeminded people, to access the correct healthcare professionals, to learn about different treatment options, and to self-manage their symptoms.

The wealth of information, opinions and experiences we recorded from this research project will help The Pituitary Foundation to continue supporting patients in the best way possible. It will also help inform our campaigns work and help us raise awareness in order for pituitary patients to receive the best care possible.

 

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