Local women create a 'dream room' for ailing 11-year-old

Local women create a 'dream room' for ailing 11-year-old

Keeping a positive outlook is a huge variable when managing a chronic illness successfully.

This "dream room" concept is a tremendous idea for boosting the morale of any patient, but young patients especially!

I will share this idea with other groups. Thanks to Jim Bornac for finding and sharing this news!

: Joseph Carpenter

On Fri, Sep 24, 2010 at 4:42 PM, wrote:

Local women create a 'dream room' for ailing 11-year-old

Cote said this year's room is being designed for Sarah Valade, an 11-year-old girl with Central Nervous System Vasculitis (CNSV), an inflammation of the the ...

http://www.timminstimes.com/ArticleDisplay.aspx?e=2772512

Attending Seminar - Advocating for Cancer Patients

I will be going back to school tomorrow as I attend a day long legal seminar on Advocating for Cancer Patients.

Why does this matter?

I figure the same laws that protect cancer patients when they get their treatments, will also apply to cases where vasculitis patients are denied insurance payments for reasons like, "This medication is an investigational or experimental treatment," or "This therapy is not a standard of care." Both reasons can be invalid for denying patient care if the prescribing physician has followed the accepted practices for a vasculitis specialist. Who decides what those standards should be? Is it the insurance companies? No. In the case of orphan diseases, like vasculitis, it is more often the doctors who specialize in treating the condition that collectively determine the appropriate standard of care.

Now tomorrow, I will look to learn how to put some teeth behind that statement. Something they might have to sit up and pay attention to.

As I prepare to learn how to better advocate for my daughter's medical care, I may also pick up a few skills along the way. If you wish to know more, keep an eye on this blog, or consider coming to a monthly meeting. If I  know you are coming, I can prepare a summary presentation on this topic including handouts. RSVP anyone?

Here is the low down on what is going to go down...

The NMVasculitis blog got a facelift

If you have not been in a while, go check out the new design:

http://nmvasculitis.blogspot.com

Whatcha think?

          Fabulous Darling?
     or
          Fuggedaboutit?

I need your stories, so I can make money for vasculitis research

If you follow the news for the Central NM Chapter of the Vasculitis Foundation, then you may recall I mentioned back in August that we have a unique fundraising opportunity coming up.

http://nmvasculitis.blogspot.com/2010/08/haley-is-feeling-better-meeting-tonight.html

"AWARENESS AND FUNDRAISING EVENT COMING UP NEXT MONTH

=====================================================

In other news, on September 21st, our chapter will be represented at the kickoff picnic for a federal fundraising effort. The Combined Federal Campaign (CFC) was started in 1961 by President John F. Kennedy and is the only authorized solicitation of employees in the federal workplace for charitable organizations."

With very little commitment and time, I, and one or two of you who may volunteer to go with me, will attend the Kick Off for the 2010 Combined Federal Campaign (CFC). This will give us the chance to personally represent the face of vasculitis to hundreds, or potentially thousands of federal employees who come to the kick off to decide how they are going to allocate their charitable donations. It is a sure winner, but only if we convince them that vasculitis is a cause worthy of their support.


You can help me help you by sharing your words with me. Simply write me a letter detailing your personal vasculitis story. The same story you must have told a thousand times. Tell me how you first knew you were sick, how you were diagnosed, and include some highlights, both good and bad, about that experience. 


If you feel really generous, speak to the donors in your own voice and tell them why you think they should support research into vasculitis. If you optionally choose to share a photo, then I can add that to our display to show them there are real people affected by these terrible conditions.


If you know a friend or family member who has vasculitis, you can tell your version of their story. That will be good to show how vasculitis changes more lives than people realize.


I will read your stories, and without giving away your identity at all, I can use your stories to make sure we have plenty to say about vasculitis patients in New Mexico.


Even a few paragraphs will be very helpful. Do not hesitate, share your story today!


Some of you have told me your stories at a chapter meeting, but I need it in writing so I can get in my head good. That way the stories will be ready when I am standing there asking people to support vasculitis research. I want them to contribute, so that you can someday enjoy improved treatments, and hopefully also a cure.


Please send your stories to Joseph Carpenter by Email, Fax or Postal Mail. By jet plane or slow moving mule train.  I will be doing more of these events, so if you don't get to it now, please get to it eventually. I will speak as the voice for those of you who cannot speak for themselves.


--
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
New Mexico Chapter Leader

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org

Vasculitis Research Money - Where Does It Come From?

Vasculitis Research Money - Where Does It Come From?

We learned at the 2010 Vasculitis Symposium that the Vasculitis Foundation (VF) is the number one private funder of clinical research concerning vasculitis. The VF has collected and spent approximately one million dollars on research for vasculitis. That is a step in the right direction. But like any lucky coin, there are two sides. Before you count your laurels folks, lets take time to look at the flip side.

For example, where is the government funding going? Take a look for yourself:

Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

http://report.nih.gov/rcdc/categories/default.aspx

"This table displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH).

At the request of Congress, the NIH embarked on a process to provide better consistency and transparency in the reporting of its funded research. This new process, implemented in 2008 through the Research, Condition, and Disease Categorization (RCDC) system, uses sophisticated text data mining (categorizing and clustering using words and multiword phrases) in conjunction with NIH-wide definitions used to match projects to categories. The definitions are a list of terms and concepts selected by NIH scientific experts to define a research category. The research category levels represent the NIH’s best estimates based on the category definitions."

Look closely. You will not see "Vasculitis" listed on that table.

Crohns Disease gets 58 million. If you have gastrointestinal symptoms, maybe they will learn something that will help you down the road.

Arthritis gets 259 million dollars, and many vasculitis treatments are the so called "red-headed step children" of treatments that were discovered arthritis research. So perhaps that will yield some results that, in a decade or two, maybe, will trickle down as new treatments for vasculitis patients.

Antibacterial Products: Can You Be Too Clean?

Here is another article that rang my bell with the flu season coming up.

CVSCaremark Health Resources

"Antibacterial Products: Can You Be Too Clean?

by Elissa Sonnenberg, MSEd

In a world full of runny noses and hacking coughs, products with labels like "antibacterial" and "antimicrobial" regularly dispense hopes of germ and illness-free lives to their users. But, as the variety of germ-fighting products continues to rise, medical experts continue to disagree over their benefits and potential long-term effects."

Click this line to see the full article. (If you are reading this from the mailing list, you will need to go to a browser and read it in the blog. This link is HUGE.

Here are my own two cents on this topic...

My own experience with the, "Can you be too clean?" question came in the early days of Meaghan's diagnosis. I was trying to figure out the exact percentage of her immune compromise, then I was quickly made to understand that there is no way to know that for sure with any precision, and even if you could, it changes depending on other variables. Even without an autoimmune disorder, or taking prescription medications that suppress the immune system, every person is unique. Your "healthy baseline" is going to be different from every other human being.

So, the best advice we got was to follow the best advice we all get for staying healthy:

• Wash your hands and use antibacterial rinses when you cannot.
• Stay away from sick people
• When you get sick, stay home and get better as quickly as possible
• Lots of rest and fluids, especially water

Patients with autoimmune disorders can take that advice seriously, but come on... really... what is the answer to this how much should I protect myself from germs?

I pressed further and finally got some doctors to admit that in fact, if I protect Meaghan too much, then her natural immune system will suffer. Some researchers have suggested the immune system needs to be provoked in order to stay strong. Basically, if a person is too well protected from germs, and never has the chance to stimulate their immune system with enough crap to keep it worked out and healthy, then they are actually more likely to get sick. [The paraphrasing is my own.]

So what I took away from all that was that we should protect ourselves, but not too much... So it remains a balancing act.


Here is a good definition of "autoimmunity" you can use to describe it to others:


"The immune system can suddenly turn on itself and target its own organs, tissues and cells for destruction: what we call autoimmunity. Most of the more than 70 distinct types of autoimmune diseases are rare, but collectively they affect millions of individuals worldwide." (Editorial: Unraveling Autoimmunity, Nature Immunology 2, 755 (2001) or doi:10.1038/ni0901-755)

You can request this document from a number of document delivery services

• British Library Document Supply Centre (http://www.bl.uk/services/listings.html)
• CIST Canadian Institute for Scientific and Technical Information (http://cisti-icist.nrc-cnrc.gc.ca/eng/ibp/cisti/faq/document-delivery/cisti-infotrieve-collaboration.html)
• Infotrieve (http://www4.infotrieve.com/default.asp)
• Thomson ISI Document Delivery (http://www.thomsoninnovation.com/ti/workflow/docdelivery/)

You can also request this document from your local library through inter library loan services.

New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer

Hello Folks,

This is not exactly new news, but I found this article to be more easily understood than most in terms of answering the question, What is the difference between Cyclophosphamide and Rituximab?

Here you go.

New Therapy For Vasculitis Expected To Help Patients Avoid Infertility And Cancer

http://www.sciencedaily.com/releases/2009/10/091018141723.htm

ScienceDaily (2009-10-17) -- Researchers have identified that Rituxan, a drug previously approved for the treatment of non-Hodgkin's B cell lymphoma and rheumatoid arthritis, can treat severe ANCA-associated vasculitis as effectively as cyclophosphamide, the current standard therapy.

The Spoon Theory

The woman who wrote this article has Lupus, another autoimmune disorder. The Spoon Theory has made the rounds, so some of you may have heard of it before.

The Spoon Theory written by Christine Miserandino

Right now, Meaghan is seeing the benefits of Rituximab and Azathioprine, (knock on wood) which seems to be allowing her to get her Prednisone down. She is at 10mg and holding for now, pending her next checkup and infusion.

The daily grind with vasculitis puts her, and other patients, in the category of people who can use the Spoon Theory to explain to others just how it is when living with vasculitis. Visual aids included if you have access to spoons!

Remember I cannot publish the entire article, because of copyright, but I encourage you to visit Christine Miserandino's page to read the entire article. You can even download a PDF for printing, or order a poster if it suits you.