Rare Disease Day - Wednesday February 28th

#ShowYourRare

*Did you know that there are more than 6000 rare diseases in existence? 

*50% of rare diseases affect children? 

*1 person out of every 20 will live with a rare disease in their lifetime?

*Rare Disease day is celebrated on the last day of February each year. 

*80% of Rare Diseases have genetic origins while others are the result of infections, allergies or                                                                     environmental causes.

No one asks to have a rare disease, I know I didn't. My Crohn's isn't considered a rare disease because  more than 200,000 people in the US are diagnosed with the disease. According to Crohn's Colitis Foundation only 10,000 to 20,000 people in the US have Short Bowel Syndrome, there is no known cure but can effectively be treated. People suffering from one or more of the over 6000 Rare Diseases can have symptoms that vary by disease and by patient. With me the issues and treatments that work with my SBS vary greatly from others that I know. Me and my 79cm of small bowel are able to function without the assistance of TPN while still receiving IV Hydration and fluid supplementation. Others I know with about the same amount of small bowel need daily TPN or nothing at all to help absorb the nutrients we need to survive. 

A Rare Disease can be hard to diagnose and treat due the lack of experienced Physicians when they come across it. Delaying diagnosis can delay treatment which will can affect the patients quality of life. Once you have a diagnosis, finding the right care team can be hard due to physical location of patient to medical facilities, cost involved in treatment, family or monetary issues or a multitude of other reasons. 

Rare Disease day is a day to raise awareness of how the diseases impact the daily lives of those living with them. Raising awareness of the general public and more importantly, researchers, medical and health professionals reinforces the need to research cures to the many diseases. There are still many diseases that have no cure or medicine to help relieve the symptoms. Several of my co-workers and acquaintances are going to their state Capitols to meet with legislators to advocate for the cause. This is not just a day for awareness in the US but around the world as well. When you have doctors and researchers sharing knowledge and information, hopefully more cures or solutions can be found to cure or treat the symptoms of the may rare diseases. 

On this Rare Disease Day #ShowYourRare by posting yours or your loved one story and picture online at https://www.rarediseaseday.org/tell-your-story. change your Facebook or Twitter profiles to show you care. In a perfect world, the number of people with rare and incurable diseases would be diminishing but sadly that is not the case. For all of of those living, loving and laughing with a Rare Disease show you care today by #ShowYourRare.

Michelle

Statistics from www.rarediseaseday.org