The Reason for Awareness Month

I meant to make this post yesterday, but forgot.

Vasculitis Awareness Month is over for another year and I think my game went pretty well. I got lots of new visits to my blog and spoke about vasculitis to many different people!

One really amazing thing happened this month, as well. I had my Rituxan infusions and during the first one I gave my infusion nurse one of the cards I had written out as she asked me what I was doing the infusions for. When I told her that I had vasculitis she told me that she, also, had a type of vasculitis! It was one that I had never heard of before and she told me that for over a year her doctors had been treating it like it was an infection until someone figured it out!

Between patients she was checking out my blog and followed a link to the Vasculitis Foundation where she read the story of someone else whom had the same type of vasculitis she had!

Situations like that are the reason for Awareness Month! And I am so glad that she was able to read about someone else that was dealing with the same thing she was!

Things That Really Grind My Gears

I may have already shared this picture during awareness month, but it works for this post.

When I shared the above meme in some of the vasculitis groups some people commented that we need to give the doctors a break. They study so many other things that the less than a day on average devoted to rare diseases is really all they can fit in.

I understand that. Being a recent college graduate (Bachelor's level, not post graduate level) I get that there is a lot of stuff that goes into being a student and there is no possible way for a person to learn everything about every disease out there. So then why is it that doctors have to fake that they do?

I don't know how many times, how many patient stories I've heard that boil down to: My doctor had no idea about vasculitis but decided to fake it. Or the ever present: My doctor had no idea about vasculitis so they refused to answer any questions about it and instead left me to the less than capable hands of doctor google to try and figure out what to expect. These situations are not right, they should not be happening!

Don't even get me started on the doctors that decide to pretend to be experts just so they can dismiss your symptoms as things that are unconnected to your disease

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Everyone and their dog seems to know the amount of work that goes into being a doctor, everyone knows that doctors are also human (unless you're going to some futuristic robot doctor) and that there are going to be things they have no idea about. I think that knowing these things means that most people aren't going to have their brains melt down if a doctor says that they aren't sure about this specific disease so they will have to look some things up or will find an expert to send you to. Or maybe a lot of people will have a brain melt down if this happens because doctors aren't known for doing this.

Is it really that much to ask for doctors that are willing to be seen as not an expert in everything that comes to medicine?

I know there are doctors that don't do these things and they are to be treasured. My gp was like this. He only had a vague idea about vasculitis and that it was similar to lupus so you know what he did? He listened to me as to what symptoms I was experiencing and he was not afraid to talk to the other doctors I see that DO know about vasculitis. He would refer me to them if something was out of his scope, but he would do what he could to make sure I knew where about my health stood rather than sending me home to doctor google.

Saying so Long to Dr. House

Alright, I know I've been a little dismissive of House in the past. Very often when they have included vasculitis in the episode there are many things that are wrong or are inaccurate. While this aspect is harmful to those of us with vasculitis because normal doctors do not exist in a vacuum and many of them, whether they want to admit it or not, watch medical dramas and are as likely as the rest of us to believe what they see on the tv.

On the other hand, House has done some good for vasculitis. They are the only show I am aware of that has consistently mentioned it and in their own way have brought the term to the outside. They have shown that, much like Lupus, vasculitis can mimic any disease and is something serious and should be taken seriously. I know of one person who realized how serious their condition was because they heard it mentioned on House. I have a friend who has noted how many times vasculitis is mentioned on the show. It's in his consciousness.

After many years, House is now coming to an end. The final episode is tonight so stay tuned and keep an eye out for billboards that mention the Vasculitis Foundation. Yes, the crew of House has contacted the vasculitis foundation so that in their last episode they can do one more thing to help spread the word about this group of rare diseases. Fitting that it should happen during awareness month!

Vasculitis Awareness Month!

It's that month of the year again! Vasculitis Awareness Month, or May as normal people call it.

Look guys, I'm internet famous for vasculitis. Not exactly what I was planning on, but hey. Someone even asked me if they could put my video in a documentary about vasculitis. I said sure even though I think I look and sound like a complete goob in it.

Sorry if I didn't look like what you thought I did. When I made this video I didn't have plans on it being posted anywhere, but since the VF put it on youtube I figured, "What the hey- People are gonna see it now."

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.

More Awareness

I know, I know, I talk about awareness A LOT, but we always need more of it. Always.

For many awareness equals ribbons! Lots and lots of ribbons!

Vasculitis doesn't have it's own ribbon, unfortunately. Currently we are kind of borrowing the ribbon color for AIDS (it's AIDS awareness day, BTW) which causes some problems. For one thing, it make people assume you have AIDS for another, it can lessen the impact of the AIDS awareness ribbons. This isn't something we want, but we're kind of limited in color options.

AIDS had the first ribbon, it was red. The Susan G. Kolman foundation then latched onto this idea of ribbons and changed the color to pink for themselves (funny, they can take the ribbon idea from AIDS but when the Vasculitis Foundation wanted to use the word "cure" in their slogan Susan G. Kolman threatened to sue because it would "confuse people").

There are many different ways some of us are trying to raise awareness for ourselves. Weggies Unite suggests having a a pajama AI day. Check out the link, it is an awesome idea! Maybe if we can get a symbol for ourselves we can make actual autoimmune pajamas for people to buy and wear.

We tried the Chase Giving thing, but apparently there were issues with certain groups cheating and using robot voters. We're still trying, several people have started doing drives of their own, trying to raise awareness in their own ways. Friends can help too. They can read about vasculitis, they can talk to others about vasculitis, suggest it for school fundraisers, work fundraisers. Whatever. Every little drop in the bucket helps!

Research, Research, Research

Alright. I've spoken about this many, many times. Most recently in my rant about Dr. House and his horrible medical skills. Vasculitis in it's many forms needs MORE RESEARCH.

But this comes with a catch. Research can't happen unless there is money. When  all 15 forms of vasculitis are considered orphan diseases they aren't getting much money from the government for research and when we are competing with uber giants in the charity arena such as the Susan G. Koleman Foundation who, by the way, tried to sue the Vasculitis Foundation for having the audacity to use the word "cure" in their slogan (apparently if more than one medical charity uses that word it becomes "confusing for donators", come on) we aren't getting much attention at all.

It always comes down to teh monies.

The good news is that the Vasculitis Foundation has been put among the Chase Community Giving selections. This is something that Chase does every year where they have people on Twitter and Facebook vote for their favorite charities (divided into larger charities and smaller charities). The charities that make it into the top 100 get $25,000 each while the top three charities get a larger portion than that (I think those ones get a part of $3,000,000).

I am not sure if you have to be part of facebook or twitter (please try the link even if you aren't) http://bit.ly/uAP3CB if that link doesn't work there is an event set up that can send you to the right place Vote for Vasculitis! All you need to do is click 'Vote' (from facebook you need to allow the Chase Giving app first) and you will have made a huge difference in someone's life.

Because we are so used to not getting much money, the Vasculitis Foundation is good about making what they do get stretch. We are hoping to use this money for research and support for patients with vasculitis. This means anyone with Behcet's Disease, Buerger's Disease, Central Nervous System Vasculitis, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Henoch-Schonlein Purpura, Hypersensitivity Vasculitis, Kawasaki Disease, Microscopic Polyangiitis, Polyarteritis Nodosa, Polymyalgia Rheumatica, Rheumatoid Vasculitis, Takayasu's Arteritis, and Wegener's Granulomatosis.

This picture might be funny, but it is true. As a patient I know more about my disease than most doctors. 

Research helps us find new treatments, causes, and hopefully a cure. Support helps patients understand their disease and helps patients get to the few treatment centers located around the world. Support can also help get the word and disease pathologies out so more doctors recognize symptoms and less patients die unnecessarily. 

Voting ends on the 22nd!