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Showing posts with label education. Show all posts
Showing posts with label education. Show all posts
Tuesday, April 17, 2012
Attend the 2012 Vasculitis Symposium Webinar
Wednesday, December 28, 2011
Thursday, December 15, 2011
Happy Holidays!
I REGRET NOT BEING ABLE TO ATTEND THE DECEMBER MEETING TONIGHT
Recent work and personal commitments have me scrambling to get things done, and I am actually behind on some commitments. As I received no RSVPs for this meeting, I do not anticipate my absence will affect anyone. However, if any of you should decide to go, please let me know that you did go and what you did to make it a vasculitis event.
I am, as always, available to schedule a meeting with any vasculitis patient or caregiver who needs support or advice. You need only contact me to set up a meeting.
POSSIBLE CHANGE IN 2012 MEETING FREQUENCY
Considering the low attendance at monthly meetings, which is actually zero for some meetings, I am contemplating reducing the frequency in 2012 to quarterly meetings. I will make that decision soon and follow up with another announcement. If I do change the frequency, then the new schedule will most likely be February, April, August, and December.
REACHING OUT FOR HELP IN 2012
I would like to reach out again for ideas about what you would like to see and do at these meetings. This chapter is in a Catch-22 situation with planning events. Without more help from volunteers, and a reasonable certainty of attendees, I have been reluctant to spend the extra time and money that are needed to set up talks by doctors and other organized events that perhaps you might be interested in attending. I know some of you have expressed a willingness, but the timing never seemed to workout.
For example, with $500 for a booth fee and enough volunteers to man the booth for two days, we could participate in events like the NM Health Fair, and other events throughout the year. The key would be to get a group of people committed to help, and pick the dates and events we would like to be involved with.
Another example, some of us have talked about attending the Run for The Zoo. With a little planning, we could attend the 1K or 5K walk /run as a registered group, and wear T-Shirts, carry a banner that would most likely get noticed by the local news media. I could even arrange an interview. You may not be able to walk 1K, but what about your children? What about your niece, or your grandson? They can walk on your behalf.
The best way to ensure a good turnout would be for all of us to reach out to our friends and families. Everyone in the family, ages 1-100, could participate and help spread awareness. Awareness ultimately equals funding for seed grants, either directly through private donations to the Vasculitis Foundation, or indirectly through public funding that is connected to public awareness. As more people are made aware about vasculitis, and its impact on entire families, the patients become the immediate beneficiaries.
RECRUIT YOUR FRIENDS AND FAMILY MEMBERS AS VASCULITIS ADVOCATES
How many times have you seen that look on a loved ones face? You know they want to help, but do not know what to do. They even ask you, "How can I help?" but you know they cannot take your pain. But they can help in other ways.
First of all, by becoming a paid members, they can help keep the Vasculitis Foundation in the business of helping patients like you, to get the information needed to find better treatments and to give support.
Secondly, by donating, they can contribute to the number one private funding agency for research into new treatments and cures for vasculitis. That's right. The Vasculitis Foundation is not just a "feel good" organization, they also contribute directly to cutting edge vasculitis research.
So, when you think about your New Years Resolutions this year, consider renewing your membership, recruiting your friends and family, and ask them to participating in local events that will help spread awareness and education. If you are willing, have any of your friends or family contact me anytime for more information, or just show up at one of the meetings so we can talk about what to do next. The better your friends and family are informed about vasculitis, the better support they can provide to you, as well as help grow the organization.
IF WE BUILD IT, WILL YOU COME?
After speaking with chapter leaders from around the country, most chapters of the Vasculitis Foundation face similar challenges with "If we build it, will they actually come?"
The way I see it, any grass roots chapter organization begins with attendance at regular meetings.
Since I do not know who might show up, I usually go to the meetings prepared to either orient a new patient or else discuss ideas for awareness and education events. If you can get your families involved then we may be able to drum up the able bodied volunteers we need to make an impact.
So, what do you say? Will you help? You can start by staying in touch to let me know you are aware and that you care.
Then if you can take that next step and pass out a few brochures to people you meet, let them know about vasculitis, and spread public awareness about this condition. These are small things anyone can do to make a difference.
I am going to begin right now by arranging memberships for own my parents and siblings.
Wishing you a Happy Holidays,
Joseph Carpenter
Chapter Leader for New Mexico
Vasculitis Foundation
Recent work and personal commitments have me scrambling to get things done, and I am actually behind on some commitments. As I received no RSVPs for this meeting, I do not anticipate my absence will affect anyone. However, if any of you should decide to go, please let me know that you did go and what you did to make it a vasculitis event.
I am, as always, available to schedule a meeting with any vasculitis patient or caregiver who needs support or advice. You need only contact me to set up a meeting.
POSSIBLE CHANGE IN 2012 MEETING FREQUENCY
Considering the low attendance at monthly meetings, which is actually zero for some meetings, I am contemplating reducing the frequency in 2012 to quarterly meetings. I will make that decision soon and follow up with another announcement. If I do change the frequency, then the new schedule will most likely be February, April, August, and December.
REACHING OUT FOR HELP IN 2012
I would like to reach out again for ideas about what you would like to see and do at these meetings. This chapter is in a Catch-22 situation with planning events. Without more help from volunteers, and a reasonable certainty of attendees, I have been reluctant to spend the extra time and money that are needed to set up talks by doctors and other organized events that perhaps you might be interested in attending. I know some of you have expressed a willingness, but the timing never seemed to workout.
For example, with $500 for a booth fee and enough volunteers to man the booth for two days, we could participate in events like the NM Health Fair, and other events throughout the year. The key would be to get a group of people committed to help, and pick the dates and events we would like to be involved with.
Another example, some of us have talked about attending the Run for The Zoo. With a little planning, we could attend the 1K or 5K walk /run as a registered group, and wear T-Shirts, carry a banner that would most likely get noticed by the local news media. I could even arrange an interview. You may not be able to walk 1K, but what about your children? What about your niece, or your grandson? They can walk on your behalf.
The best way to ensure a good turnout would be for all of us to reach out to our friends and families. Everyone in the family, ages 1-100, could participate and help spread awareness. Awareness ultimately equals funding for seed grants, either directly through private donations to the Vasculitis Foundation, or indirectly through public funding that is connected to public awareness. As more people are made aware about vasculitis, and its impact on entire families, the patients become the immediate beneficiaries.
To become a member or make a donation now, go to these web pages:
Memberships: http://www.vasculitisfoundation.org/vision/join
Donations: https://contribute.vasculitisfoundation.org/donate/info
RECRUIT YOUR FRIENDS AND FAMILY MEMBERS AS VASCULITIS ADVOCATES
How many times have you seen that look on a loved ones face? You know they want to help, but do not know what to do. They even ask you, "How can I help?" but you know they cannot take your pain. But they can help in other ways.
First of all, by becoming a paid members, they can help keep the Vasculitis Foundation in the business of helping patients like you, to get the information needed to find better treatments and to give support.
Secondly, by donating, they can contribute to the number one private funding agency for research into new treatments and cures for vasculitis. That's right. The Vasculitis Foundation is not just a "feel good" organization, they also contribute directly to cutting edge vasculitis research.
So, when you think about your New Years Resolutions this year, consider renewing your membership, recruiting your friends and family, and ask them to participating in local events that will help spread awareness and education. If you are willing, have any of your friends or family contact me anytime for more information, or just show up at one of the meetings so we can talk about what to do next. The better your friends and family are informed about vasculitis, the better support they can provide to you, as well as help grow the organization.
IF WE BUILD IT, WILL YOU COME?
After speaking with chapter leaders from around the country, most chapters of the Vasculitis Foundation face similar challenges with "If we build it, will they actually come?"
The way I see it, any grass roots chapter organization begins with attendance at regular meetings.
Since I do not know who might show up, I usually go to the meetings prepared to either orient a new patient or else discuss ideas for awareness and education events. If you can get your families involved then we may be able to drum up the able bodied volunteers we need to make an impact.
So, what do you say? Will you help? You can start by staying in touch to let me know you are aware and that you care.
Then if you can take that next step and pass out a few brochures to people you meet, let them know about vasculitis, and spread public awareness about this condition. These are small things anyone can do to make a difference.
I am going to begin right now by arranging memberships for own my parents and siblings.
Wishing you a Happy Holidays,
Joseph Carpenter
Chapter Leader for New Mexico
Vasculitis Foundation
Monday, July 25, 2011
Movie Review: Fat, Sick & Nearly Dead
I recently stumbled across a film in Netflix that may change my life, and it also made me think of all the vasculitis patients out there who might benefit from considering a lifestyle change. Just taking meds is not enough to protect your longterm health.
I have long believed, and I tell my daughter all the time, that there are at least three areas of personal health where vasculitis patients can take action to positively affect their health. They can make choices regarding the quality of their diet, exercise, and sleep. You can list objections, but the fact remains that how you manage these three things is up to you.
One link worth special mention is the jointhereboot partners page (listed at the end of this article), where you can link to specific information by people featured in the film, including Dr Joel Fuhrman, a medical nutrition specialist. Every patient is different, but if you are trying to reduce your prednisone, your doctor may agree that eating natural foods and sticking to an exercise program is one healthy way to do it.
If you ever felt powerless regarding your condition, this film, and the ideas presented in it, can give you an action plan that will make a huge difference in your life. Watch the film, then call your doctor and talk it over. You do not know what you are really capable of, unless you try.
Now the key to success for me, is to transform intellectual understanding into daily action and transform habits on a permanent basis. That is what the Reboot Movement is all about.
I read and study every day to improve different aspects of my life. For example, when learning to be a better basketball coach, I learned that it takes at least 28 days of concerted effort for a human being to change a habit. Now, instead of challenging young players to improve their ball handling habits, I am going to challenge myself to improve my diet and exercise habits.
Going back to those with a chronic illness, the film repeats over and over how important it is to consult with your doctor and have blood levels checked when you have a condition that requires medication. As you will see, change is not easy, but you will also see how both of these men were able to reduce or eliminate their medications as a result of their own actions.
So, here is some information about the film.
Here is the official trailer on YouTube:
Another video that is also compelling is Joe Cross's interview with Cyndi Edwards on Daytime.
The statistics do not lie. According to U.S. Centers for Disease Control (CDC) figures, "About one-third of U.S. adults (33.8%) are obese. Approximately 17% (or 12.5 million) of children and adolescents aged 2—19 years are obese" (citation below). In the film, a nutritionist at Brigham & Womens Hospital named Stacy Kennedy, MPH, RD, LDN, states "the kids of today are not expected to live as long as their parents." That is very alarming, but also believable when you look at how kids eat. Put it all together, and I think everyone should watch this film.
Cited from: CDC Obesity and Overweight Trends
http://www.cdc.gov/obesity/data/trends.html
Companion website:
http://www.fatsickandnearlydead.com/
Includes more about the stories, recipes, juicing testimonials, links to YouTube and FaceBook, and to the DVD. Also links to the Reboot Movement where you can get more detailed information about how to go about planning your own personal reboot.
http://jointhereboot.com/
This website gives you all the information you need to evaluate the reboot program, and if you decide to go for it, all the information you need to make it a part of your life.
How many of you are willing to challenge yourself to a personal health reboot? Let me know and we can support one another.
I have long believed, and I tell my daughter all the time, that there are at least three areas of personal health where vasculitis patients can take action to positively affect their health. They can make choices regarding the quality of their diet, exercise, and sleep. You can list objections, but the fact remains that how you manage these three things is up to you.
One link worth special mention is the jointhereboot partners page (listed at the end of this article), where you can link to specific information by people featured in the film, including Dr Joel Fuhrman, a medical nutrition specialist. Every patient is different, but if you are trying to reduce your prednisone, your doctor may agree that eating natural foods and sticking to an exercise program is one healthy way to do it.
If you ever felt powerless regarding your condition, this film, and the ideas presented in it, can give you an action plan that will make a huge difference in your life. Watch the film, then call your doctor and talk it over. You do not know what you are really capable of, unless you try.
Now the key to success for me, is to transform intellectual understanding into daily action and transform habits on a permanent basis. That is what the Reboot Movement is all about.
I read and study every day to improve different aspects of my life. For example, when learning to be a better basketball coach, I learned that it takes at least 28 days of concerted effort for a human being to change a habit. Now, instead of challenging young players to improve their ball handling habits, I am going to challenge myself to improve my diet and exercise habits.
Going back to those with a chronic illness, the film repeats over and over how important it is to consult with your doctor and have blood levels checked when you have a condition that requires medication. As you will see, change is not easy, but you will also see how both of these men were able to reduce or eliminate their medications as a result of their own actions.
So, here is some information about the film.
Fat, Sick & Nearly Dead
1h 37m 2010
Director Joe Cross takes a journey of healing to examine and change his own life choices, and along the way meets Phil Staples.
This movie details how they both dramatically improved their lives by taking control to regain balance. Both men were obese. Both men were also diagnosed with Uticarial Vasculitis, so the odds against them even meeting one another were phenomenal.
The two success stories are a testament to what is possible when life changing awareness efforts go grass roots. They launched a movement to help other people reboot their lives. This film takes those grass roots efforts and brings them to a global audience.
Here is the official trailer on YouTube:
Another video that is also compelling is Joe Cross's interview with Cyndi Edwards on Daytime.
The statistics do not lie. According to U.S. Centers for Disease Control (CDC) figures, "About one-third of U.S. adults (33.8%) are obese. Approximately 17% (or 12.5 million) of children and adolescents aged 2—19 years are obese" (citation below). In the film, a nutritionist at Brigham & Womens Hospital named Stacy Kennedy, MPH, RD, LDN, states "the kids of today are not expected to live as long as their parents." That is very alarming, but also believable when you look at how kids eat. Put it all together, and I think everyone should watch this film.
Cited from: CDC Obesity and Overweight Trends
http://www.cdc.gov/obesity/data/trends.html
Most powerful quote from Phil Staples:
"What advice would you like to give to others considering a Reboot or a lifestyle change?
PHIL:Please stick with it the first 4 days, I promise you all the detoxing and the feelings will be over soon. On day 4, you will feel great and the rest of the Reboot will be a blast. You will feel better, lose weight, and your body chemistry will be where your doctor wants it. All the doc will be able to do is smile and shake his head at the ease of it all."
Cited from: JoinTheReboot Expert Blog article, "Phil & Bear: Where are they now?"
http://jointhereboot.com/phil-bear-where-are-they-now/
Companion website:
http://www.fatsickandnearlydead.com/
Includes more about the stories, recipes, juicing testimonials, links to YouTube and FaceBook, and to the DVD. Also links to the Reboot Movement where you can get more detailed information about how to go about planning your own personal reboot.
http://jointhereboot.com/
This website gives you all the information you need to evaluate the reboot program, and if you decide to go for it, all the information you need to make it a part of your life.
Netflix description:
"Focusing on two men whose bodies have been trashed by steroids, obesity and illness, this documentary chronicles the rigorous healing path -- including a two-month diet of fruits and vegetables -- that both attempt in a bid to rescue their health."
Note: I would suggest it might be worth trying Netflix for a month just to watch this film.
If you already have Netflix, here is the link: http://movies.netflix.com/WiSearch?oq=fat+sick&ac_posn=1&v1=Fat%2C+Sick+%26+Nearly+Dead
How many of you are willing to challenge yourself to a personal health reboot? Let me know and we can support one another.
Monday, July 18, 2011
The Silent Killer | LIVESTRONG.COM
I have been using Livestrong.com, along with a related mobile app on my phone, to keep track of my diet and exercise. I know roughly how many calories go in, and I know roughly how many calories get burned, so I can intelligently keep track of these things.
As you all surely must know, the number one thing you can do to improve your health, without medications, is to improve your diet and exercise. By improving your baseline, you will see other benefits, such as a decrease in the effect of your side effects. The healthier you are, the better your overall condition is going to be.
So, one way to do this is with the free services at www.livestrong.com. They will give you the tools you need to track what you eat and how you exercise, so you can improve your bottom line. Just knowing the data will help you make more informed choices.
There are also a ton of articles about ways to stay healthy. Unlike some other sites, it is a not-for-profit effort, so you won't be asked to buy anything you don't want.
You can enter your data about food and fitness in any web browser, and if you have an Android, iPhone, or even just an iTouch device, you can also enter all this data on the go. It takes a few seconds to do, and it will make all the difference in your health, and in your life.
Join me in a healthier lifestyle. Try the tools at www.livestrong.com today.
PS: The article referenced above is all about avoiding processed sugars to reduce the risk of diabetes. it is also a good read, since every patient with vasculitis is also at high risk for diabetes. I encourage you to read the article, and perhaps look for the book, Sugar Nation, when it comes to a library near you. Highly informative stuff.
Wednesday, June 22, 2011
New section on NMVascultis Education page for Syndicated Medical News
I am crawling out from under the rock I found myself under and added some new resources to the Education page of the NMVasculitis website. There are some great resources there for general medical news, and the MDLinx service will deliver specific topics right to your inbox:
Syndicated Medical News
https://sites.google.com/site/nmvasculitis/Home/support/education#TOC-Syndicated-Medical-News
Syndicated Medical News
https://sites.google.com/site/nmvasculitis/Home/support/education#TOC-Syndicated-Medical-News
Thursday, June 16, 2011
June Meeting tonight - agenda is ideas for the VF website
The meeting tonight is again at 6PM at Deli-Berry (2520 Juan Tabo Blvd NE). You can find more details and map links on the nmvasculitis website:
http://www.nmvasculitis.org/Home/support/meetings
I hope to see some of you tonight, at Deli-Berry. I will be there at 6PM, and I will stay at least an hour. If someone joins me, we can stay as long as you like. If you cannot make a meeting, call me. I will be happy to meet for a drink sometime.
My agenda tonight is to solicit ideas about improving the Vasculitis Foundation website. I am on the committee to select the company which will redesign the website going forward, and I am very interested to hear your ideas about how things can be improved. If you cannot make it to the meeting, then please send me your thoughts in Email, or call me.
I want to take this opportunity to apologize to all of you for not posting to this blog during the past few months. I have answered phone calls and have been active in other ways, but not in ways that are apparent to most of you. Most of you never actually come to meetings, so it is an act of pure faith to keep holding them. I believe it is worthwhile for those times when someone does come. Sometimes it is a new patient with that deer in the headlights look, desperate for information on how to get started. Sometimes it is a chance to see one of my vasculitis friends, some of whom are becoming old friends. If and when you feel the need to participate in the vasculitis community, you can know that I and perhaps a few others will be there.
The flat fact is, I would love to see you. I feel that way every month at times like today, when I sit here wondering if anyone will show up and who they will be. I would love to see more patients, caregivers and friends of vasculitis come out to the meetings. Not only to share the practical knowledge about vasculitis, but also to break bread and share the day to day stories about your lives.
I would really like to get to know you better. If you have any interest in cultivating friendships with people that can actually understand what you are going through, I beg you to come out to the meetings, and get to know each other better. I beg you to respond to the Email group, and share those little things -- large and small -- that make us all who we are.
Do you sometimes consider the connection between how increased awareness about vasculitis directly impacts the available public funding for research? Then do you think about the obvious conclusion that more research would mean a greater chance that more and better treatments will be developed? Have you also considered that how you include vasculitis awareness in your day to day life is a huge part of that effort?
It is not the big things that make the most difference. Sure, we can organize some event to spread awareness. But I have learned that is very hard to do without any help. It requires a concentration of energy and money on a particular place and time for a limited effect.
The more effective approach is to wear it on your sleeve and tell everyone you meet your story. Do not hide from it, share it. When you have told your story a few times, it gets easier, and it really does make a difference. When you tell it enough, you can do it without relying on just the sad parts, or the hard parts, you can eventually related how even the challenges can bring light into your life. People will respond to those stories as they relate to you on a personal level.
Those people you touch carry your story with them, and they will tell it to others. They will remember your story when they vote on legislation that impacts health care, and they will remember your story when they have the chance to make other choices that impact chronic illness. Even if they never come directly in contact with a vasculitis patient ever again, your story will impact how they relate to other things in their lives which will ultimately spread those little ripples that will positively impact you. Put it out there in the universe, and it will come back to you in ways you cannot imagine possible.
As always, the Vasculitis Foundation is here to help you connect to each other, and to connect with more information. But you are a part of that process, and I need your help. Just talking with you helps me to help others. I will spend time this summer reconnecting with those of you who I have met, and connecting with some of our newer patients whom I have not yet met face to face.
Cheers!
Saturday, November 20, 2010
November Meeting Wrap-Up
Vasculitis Foundation in New Mexico
Albuquerque Chapter Meeting
November 18, 2010
Deli-Berry Restaurant
Present:
Joseph C. (CSS family)
Meaghan C. (CSS patient)
Dennis W. (WG patient)
Rupal P. (Family - WG suspected, mother still undiagnosed)
William C. (CSS family by telepresence in Skype)
We met at Deli-Berry. When I arrived, Dennis and Rupal had already introduced themselves and were busily sharing information. Rupal mother is still undiagnosed with a pending Wegeners diagnosis.
I initialized Skype and called William, who had indicated an interest in joining this months meeting. He remained connected throughout the meeting and as the only remote participant, he was able to use video and text chat. With multiple recipients, only voice connections are possible.
Most of the meeting was spent sharing links to sites that are already available on the Education page of www.nmvasculitis.org. We discussed the usefulness of www.uptodate.com, for those who can get access. Recent changes to that site allow for temporary memberships, so it is now affordable to most anyone. Rupal has two family members who are physicians, so she sends them the links for which she wants full text, and they send her the information.
We all shared the names of a few doctors, and a huge oversight was corrected. We learned that NM Arthritis Associates has several rheumatologists on staff who are already familiar with vasculitis. Those names will be added to the list soon. William used to be a board member for the NM Arthritis Foundation, so he and I may have more to talk about in terms of learning from that experience to advance the efforts of this chapter.
You are all encouraged to share the names of your good doctors who know about vasculitis on the Vasculitis Doctors Form. When you do, those names are made available to benefit other patients. If you do, then others will be more likely to also share and you will likewise benefit. So, sharing information is in your best interest.
Joseph discussed that it would be nice if access to full text articles was a membership benefit for paid membership to the Vasculitis Foundation. Then also placing them in an corss-indexed structured, database, like a WIKI. Imagine being able to search through articles on any topic that interested you. Just an idea at this point but leveraging the army of members to find and submit links and articles, then having it peer reviewed to validate the information. What a lofty but also worthwhile goal.
We did Skype at the meeting between about 6PM and 8PM. One person Skyped in and was able to participate more or less fully with the meeting.
I will use that technology again at the next meeting. You may also can find me in Skype from time to time. I am more often online in Google, but have access with Google, AOL, Skype, Yahoo, and even ICQ.
There were five at the meeting, including one remotely. Which was awesome.
Friday, September 24, 2010
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...
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...
Thursday, September 9, 2010
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)
"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.
Wednesday, September 8, 2010
Antibacterial Products: Can You Be Too Clean?
Here is another article that rang my bell with the flu season coming up.
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:
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
You can also request this document from your local library through inter library loan services.
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.
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
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.
Thursday, August 12, 2010
1999 Overview of vasculitis diagnosis by AAP
http://www.aafp.org/afp/991001ap/1421.html
This article is dated by a decade, so the treatment protocols will need to be updated. However, the text remains a good overview for the general medical professional who needs to make the diagnosis.
It is also, in my opinion, a useful overview for the patient who is still in the "mystery diagnosis" phase of the vasculitis experience. Feel free to print this and share it withe your primary care physician, or specialist. Especially if any of the symptoms mentioned here seem familiar to your condition.
As always, DO NOT DIAGNOSE YOURSELF. A proper diagnosis requires the experience and training of a medical doctor with the resources for proper medical tests to identify these medical symptoms.
This article is dated by a decade, so the treatment protocols will need to be updated. However, the text remains a good overview for the general medical professional who needs to make the diagnosis.
It is also, in my opinion, a useful overview for the patient who is still in the "mystery diagnosis" phase of the vasculitis experience. Feel free to print this and share it withe your primary care physician, or specialist. Especially if any of the symptoms mentioned here seem familiar to your condition.
As always, DO NOT DIAGNOSE YOURSELF. A proper diagnosis requires the experience and training of a medical doctor with the resources for proper medical tests to identify these medical symptoms.
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Wednesday, August 4, 2010
Rheumatology Article Aggregator
An aggregator collects information from multiple sources and presents it in a unified way. This tool collects medical articles from different sources, and presents them under their category. E.g. Rheumatology, Pulmonology, etc.
This website was suggested to me by Suzanne DePaolis, a vasculitis patient who finds it useful for helping her keep up with all the medical news related to her condition.
Perhaps you will also find it useful. Here you go.
Rheumatology - MDLinx - Rheumatology Journals, Rheumatology Research Articles
http://www.mdlinx.com/rheumatology/
This website was suggested to me by Suzanne DePaolis, a vasculitis patient who finds it useful for helping her keep up with all the medical news related to her condition.
Perhaps you will also find it useful. Here you go.
Rheumatology - MDLinx - Rheumatology Journals, Rheumatology Research Articles
http://www.mdlinx.com/rheumatology/
Tuesday, June 29, 2010
Still time to make plans to attend 2010 Vasculitis Patient Symposium
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