RARE DISEASE DAY

ARE YOU RARE? 

I'm rare! I have a rare disease living inside of me called Pulmonary Hypertension.

What is Rare Disease day?  It is a day where we, those with rare diseases, come together and fight to bring awareness to our diseases. Whether by word of mouth to people like you in our lives, or through letters to legislation to help bring the disease to light. 

Did you know that 1 out of 20 people live with a rare disease at some point in their life? A majority of Rare diseases, like Pulmonary Hypertension, have no cures.  

*What is a Rare Disease?

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

*Characteristics of rare diseases

Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families

*Common problems faced

The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.

As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.

*How to get involved with Rare Disease day

It’s simple! Post an image or selfie on any social media channel with your face painted and include the hashtags #ShowYourRare, #MyRare or #RareDiseaseDay. Share an image on your own or with your friends, family or colleagues!

For more information

go here to learn more:  https://www.rarediseaseday.org/

Thank you to Rarediseaseday.org for bringing awareness and allowing the use of your logo.  Information with * next to it was taken from rarediseaseday.org and was not my writing. All credit is to go to them for that information.  

Join me for my next blog: Encouragement living with a disease 😊💜