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!

Supply and Demand

So, how many of you have heard of the drug shortages that are going around lately?

Probably not many, unless you need one of these drugs most people aren't much interested. Well, methotrexate is one of these drugs that is now in short supply. In short enough supply that hospitals are panicking about how they are going to treat some things such as cancer.

Vasculitis is also treated with this medication. It is one of the very few approved drugs for managing the symptoms of various forms of vasculitis.

There are only four companies that produce methotrexate (mtx) for the United States and over the past few months they have all said that they are going to "voluntarily suspend production" of mtx due to quality concerns. This has left patients with very few options when it comes to getting the medicine that they need to survive. I know of some people that are trying to hoard it, others are probably thinking about switching to one of the other two medications available to use for keeping vasculitis stable.

The problem with this is that, not all patients have the same reaction to each of the medications. Some people don't do as well on Cellcept or Imuran as they do on mtx. These other two options might not work for some patients.

Now, I am all for increased quality control for the drugs people are given, but I am kind of skeptical of the quality excuse. My skepticism comes from the market. As more people demand the drugs they need to survive, the drugs that they can't live without, the companies are able to charge more. These patients don't have any other option but to pay.

I am of the opinion, paranoid I may be, that if the companies were only concerned about the quality of the drugs they were producing they would have fixed the problem with it by now and would have had production of mtx resumed.

It's not like they were trying to make a completely new drug, they were working on an old drug, a drug that was tried and true, to hopefully improve it. Why has this taken so long?

It is sad that we live in a world where lives are not valued more than someone's ability to make a profit.

I want to keep following this story, I hope I am proved wrong in my paranoid assumptions, but until I am proven wrong they will stand as they are. Please stand up and see what you can do to help with this situation. I don't want to see any more of my friends die.

http://www.fda.gov/Drugs/DrugSafety/DrugShortages/ucm050792.htm


http://www.huliq.com/3257/life-saving-childrens-drug-reaches-critical-shortage-exhaustion-seen-little-two-weeks

Fighting for the Right to Cure

Why is it that once a charity becomes big they lose sight of what is really important and focus on dragging down other charities that are working towards the same goals?

I know right now the big broohaha for the Susan G. Komen foundation is that they took funding away from Planned Parenthood which means that thousands of lower income women are not going to be able to get scanned for breast cancer. This happened because, according to SGK, Planned Parenthood is under federal investigation. An investigation that many people consider to be a waist of time. Not to mention the fact that SGK is still giving funding to Penn State even though they are also currently under federal investigation.

No, SGK really took away the funding because their current president is playing the political field. The funding has been taken away because of the political favorite pop question of abortion and a woman's right to choose. It is no secret that Nancy Brinker falls in line with the extreme political religious right that is trying to squash women's right to their bodies.

Just today, though, SGK reversed their decision. Of course, what they really said was that Planned Parenthood would not have to give back the funding they already have, while they are free to apply for a new grant from SGK it is unlikely that they will get one.They weren't even really apologizing, they were backpeddling. They didn't want to lose public face.


Of course, the good thing about this is that Planned Parenthood has seen several large donations come from people and groups that have never donated to them before. On the flip side, so has SGK.

SGK is getting more money from the political side that is against abortion because apparently these people have forgotten that breast cancer and abortion have no correlation and the grants being given to Planned Parenthood were earmarked for mammograms and breast care health. Apparently these people are pro-life except for when it comes to low income women that have cancer.

Something that has not really been addressed, though, is that SGK has been a charity bully for years and this is where this post connects with vasculitis and Wegener's. They have this habit of looking for any other charity that uses the words "the cure" in their slogans and spending donated money on millions of dollars worth of legal fees to get these groups to change their slogans. This is what happened to the VF last year. Our slogan used to be "Sticking Together for a Cure" but now we don't have one.

Some of these charities are very small and the ensuing legal  battles put them under. SGK also goes after any charity that uses the color pink. It's completely fine that they stole the idea for ribbons from the AIDS Foundation, though.

Susan G. Komen has forgotten what it is to be a charity. This is why they are so focused on putting out pink product, many of which that contain carcinogens that help cause cancer. They are more interested in making money for themselves and getting name recognition than actually helping people that are in serious need of it. I am almost glad that the real Susan G. Komen is no longer with us so she can't see what has become of the charity set up in her name.

These other groups are trying to help people. They are trying to raise research money, sometimes for breast cancer, sometimes for other cancers, sometimes for disease that are little known and have higher morbidity rates than all cancers. To paraphrase Colbert, these people can be saved, fixed, or healed, but don't cure them.

I guess it doesn't matter, though. So long as SGK can still make their money and support their political agenda.