Rare Diseases are usually chronic diseases that affects a small percentage of the world population. There is no really known cause but research is going on for testing if they are genetic, environmental and other causes. Why do I bring them up? Well there are so many out there and more and more people are getting diagnosed with them and others are dying from them. The best way to move forward in finding a cure and helping those that have not been diagnosed yet is to spread the word.
Rare Disease Day is February 28th and this year marks the 6th year that Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 24 European countries along with hundreds of patient organisations from more than 60 countries and regions worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders”. You can find out much more about this the website
Why am I posting this? I have a Rare Disease, called Wegener’s granulomatosis (WG), which has recently been renamed granulomatosis with polyangiitis (GPA). It is a form of Vasculitis and is an autoimmune disease. I would like to promote awareness by sharing my story. Below are links of my story that I have written to share and promote awareness. It is not finished and will never be since there is no cure for this disease.
This disease hit me hard at the age of 36 and has taken my hearing in my left ear, left big scars on my back, partial blindness in my right eye, left damage in my brain and given me 2 myocardial infarctions. It leaves me very fatigued and a massive list of toxic drugs with their side effects that I have to take and deal with daily. This disease would kill me if I don’t take these drugs.
I have learned a lot from this disease. I learned to fight and be strong especially for my family and to never waste the preciousness of time we have. I hope that by sharing my story I am able to promote an awareness that there are rare diseases out there and many people afflicted by them. You might even know someone with a rare disease, but not even realize the daily struggles they have to go through. Continue on to read the first part of my story.
Please feel free to share this story or one of your own and help promote awareness of Rare Diseases.
- Rare Disease Day – February 28, 2013 (blackandgoldbipolarpenguin.wordpress.com)
- Rare Disease Day- Get Involved! (chiariwarrior.wordpress.com)
- Letters: RARE DISEASE DAY FEBRUARY 29 (gloucestercitynews.net)
- How Dan’s rare disease didn’t stop his mainstream education (specialneedsjungle.com)
- One month to go til Rare Disease Day 2013! (undiagnosed.org.uk)
- What is your rare disease experience? (undiagnosed.org.uk)
- NORD Launches Campaign to Educate State Legislators About Challenges of Living With Rare Diseases (sys-con.com)
- Malattie rare (osservatoriomalattierare.it)