Happy Rare Disease Day!

Well, the day is finally here. Rare Disease Day.

I feel that I have done my part to get awareness out there. I made a video (I actually contemplated putting it up here, but then thought, "Who wants to see my ugly mug? Not me, that's for sure!"), I wrote my state representatives, I spammed people with my blog, I posted pictures, I gave a hands up to the Rare Disease page. Do you get the point? You should do some of this stuff too!

It was funny, though, I got a question asked of me today that was wondering why Rare Disease Day happens only once every four years. Doesn't that seem a little counter productive? How are we supposed to raise awareness if we only try every four years?

My response was: It's an annual event, but on leap year it's held on February 29th because that's a rare day.

Rare Disease Day pt: 4

Even after everything I have said about it, maybe some of you are still wondering, "What is so special about Rare Disease Day?" Well, I'll tell you what is so special about it.

This day is for some of the most special, rarest people out there and it takes place on the rarest day of the year. Rare Disease Day happens on leap year, February 29th. See, we're not so silly and we can do things that are meaningful. Get it, we have rare diseases and we hold our awareness campaign on a rare day?

Kidding aside, let's get down to more serious business guys. Well, maybe it's not going to be so serious.

Night before last I had a strange dream, as is common for me. The thing is, during this dream I was trying to explain what Wegener's Granulomatosis is to Dom De Luise. I'm not sure why.

Dead actors aside, I awoke the next morning with a mission. I sent out messages to EVERY representative from my state. All of them. The only ones I left out were the ones that wouldn't let me send them messages. This is what I sent:

Are you aware that Wednesday, February 29th is Rare Disease Day? I am. I suffer from a rare autoimmune disease called Wegener's Granulomatosis wherin my immune system attacks the blood vessels throughout my body. It effects less than 1 in 200,000 people and is considered a rare disease. There is no cure and no disease specific medications for patients to use. Very little research is being done for this disease.

Rare Disease Day is an international event started by EURORDIS and has become an annual event. The goal of this day is to help raise awareness.

Can you help me raise awareness and, hopefully, research for my disease and many others by showing your support of those that live with a rare disease?

I finished the message by thanking them and giving them the link to my blog.

Well, today I got two responses back! One from the Governor Herbert and another from Senator Lee. They weren't automated responses either! It pleases me to think that I might be doing something to help others get the help they need and to know I am doing my part for Rare Disease Day!

You can do your part too, you don't need to donate money. Check the link rare disease day to see what you can do to help!

Edit: just found this- you can sign up from anywhere to help send a message to President Obama and Congress http://rarediseaseday.us/take-action-now/handprints-on-the-hill/  Let them know that this is important to you!

Rare Disease Day pt: 3

Wegener's Granulomatosis is considered a rare disease. It effects less than 2 in 200,000 people and is one of the most common forms of vasculitis. The rarest form, I believe, is CNSV or Takayasu's which effects less then 1 person in 1,000,000 (I believe, these numbers may be off).

If you can't tell, Rare Disease Day is important to us. Please stop and watch this video.

On thinking about what I, personally, can do for Rare Disease Day I am thinking of taking select entries from my blog and compiling them into a book which I can publish through the kindle. We will see how it turns out. I don't think I will be able to get it out by Rare Disease Day, but we can see!

Rare Disease Day pt. 2

Alright folks, here's the download.

For Rare Disease Day (save the date, it's the 29th) you may have other things planned, seeing as how it's leap year and all that. I'm not aware of any big howdidos on the leap year, but any excuse to have a party, right?

Anyways. Take some time from your busy Leap Year party schedule to film your story (if you have vasculitis or are a caretaker) that explains how vasculitis has affected your life. The films are due by the 29th and you can see all the rules here. 

The theme is "Helping Extraordinary People Live Extraordinary Lives"

Have fun and tell your story!

Rare Disease Day

Rare Disease Day, February 29th, 2012

In less than a week, 6 days to be precise, on February 29th the world will celebrate Rare Disease Day. This is a day wherein those of us with diseases that don't have the support of governments and the public can speak out in the hopes of gaining a little bit of recognition for our struggles.

This day will hopefully bring about more people becoming aware and more people (including insurances) coming to recognize what it is to live with a rare disease. As of right now the cost for Wegener's Granulomatosis is extremely high.  "Systemic vasculitis is often life threatening and likely to produce disability or death. For example, in the case of Wegener’s granulomatosis, approximately 1500 patients are hospitalized for this illness in the US every year. Eleven percent die in the course of hospitalization, 31% become totally disabled in performing their usual occupation and 20% become partially disabled over 5 years from the time of disease onset. Between loss of personal income and hospitalizations, Wegener’s granulomatosis alone costs our health care system and patients over $40 million per year. This figure does not take into account the loss of income that results from an 11% mortality rate among hospitalized patients with this illness (Hoffman GS et al. Arthritis and Rheumatism. 41:1998; Cotch et al.: Arthritis Rheumatism. 39:1996)." (http://www2.ccf.org/inssys/Vasculitis.htm)

With more awareness these numbers may shrink. Less people will die needlessly  from this disease and fewer people will become wholly or partially disabled as more doctors come to recognize the symptoms and learn what tests need to be done. We can even hope that newer treatments will become available; treatments that are less toxic, and closer to a cure. 


For this fifth annual Rare Disease Day, the theme is solidarity. Activities started by different awareness groups around the world are going to converge on the idea that we are "Rare but strong together". All we are asking for people is to spend five minutes on this day to reflect on what it might be like to have a rare disease. To think about those you know that may have a rare disease, and to maybe come up with an idea about how you can help.

  Edit: I was actually just clued into this little tasty bit http://rarediseaseday.us/ If you go to this link and click on the Raise Your Hand button, one dollar will be donated to rare disease research!