Invisible Illness Week Outreach Described on Video By Founder

http://invisibleillnessweek.com/2010/08/10/invisible-illness-week-outreach-described-on-video-by-founder/

This is just an incredible idea! Being a chronic Illness and pain patient, I know how difficult it is when someone that just does not under says things like "but you don't look sick". The majority of us suffering from things like Chronic Pain, Migraines, Chronic Fatigue Syndrome, and so many others may not "appear" to look ill all of the time, not like we do when we have a bad cold, the flu, pneumonia, or other acute types of illness, but that surely does not mean we don't feel it. People with chronic Illnesses learn coping methods, so we may have our hair looking good, nails painted, makeup on, and be dressed when we go to the market, or shopping, but that does not mean we are not in pain, or that we feel great. We just get tired of looking sick and tired, plus for some, getting dressed, doing your pain, putting on makeup, getting your nails done, and so forth makes us feel a little better. I realize that people from afar, strangers, may not get it. And for me, it got to the place, that sometimes I go out, looking like heck, because I don't want to deal with the comments, that I look fine. Thus, you don't put makeup on, etc. Those days are usually when I am feeling like death warmed over, thus I probably look it.

I found out we will have this National Awareness week about Invisible Illnesses. What a wonderful idea, and one we can share with others so they may understand better, what being chronically ill or in pain means for us. It can happen to anyone, anytime. You may have not had a headache, body ache, joint issue, all your life, and one day you wake up to horrible pain, severe fatigue, bad headaches, and many other symptoms. No one is immune from chronic Illness and/or chronic pain. I would not wish Lupus, and my other health issues on anyone. But, I would like to help educate others about just how life altering Chronic Invisible Illness and Pain is to all of the people it encompasses... from those who have it, to family, friends, spouses, and caretakers....

Incredible News about the Lupus Medication Benlysta! FDA makes priority review

Human Genome Sciences, Inc. (Nasdaq: HGSI) and GlaxoSmithKline PLC (GSK) today announced that the U.S. Food and Drug Administration (FDA) has granted a priority review designation to BENLYSTA® (belimumab) as a potential treatment for systemic lupus erythematosus (SLE). A priority review designation is granted to drugs that, if approved, offer major advances in treatment or provide a treatment where no adequate therapy exists. The FDA has assigned belimumab a Prescription Drug User Fee Act (PDUFA) target date of December 9, 2010.


http://www.hgsi.com/latest/human-genome-sciences-and-glaxosmithkline-announce-fda-priority-review-designation-for-benlysta-belimumab-as-a-potential-treatment-for-systemic-lupus-erythema.html


I will be first in line as soon as the FDA gives the thumbs up! I have been awaiting this now for well over 2 years, watching all of the clinical trials, and the positive results. I am so elated.... Rhia

Visit Owning Pink's Pink Posse

Four Possible Causes of Migraines and some Natural Remedies

https://www.qualityhealth.com/featuredArticleSegmentSubmit

By Jeanne Faulkner
Reviewed by QualityHealth's Medical Advisory Board

What can you do to relieve your headache besides hit the medicine bottle? Here, four natural headache remedies that will knock out your headaches right now and help prevent them in the future.
There are many different types of headaches and treatment sometimes depends on knowing what's causing them. Frequently however, the exact cause is unknown.  Common culprits are fatigue, hunger, dehydration and stress.  So, rather than treating just the symptoms, why not treat the root causes naturally?

Great article, and very helpful

MOre great news in the realms of Lupus Research, Genetics and the Enviorment

http://www.eurekalert.org/pub_releases/2010-08/nioa-nle081110.php

NIH launches effort to define markers of human immune responses

Recovery Act enables research that could help improve vaccines and therapeutics

A new nationwide research initiative has been launched to define changes in the human immune system, using human and not animal studies, in response to infection or to vaccination. Six U. S.-based Human Immune Phenotyping Centers will receive a total of $100 million over five years to conduct this research.
Funding for the centers is provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health. Support for the first year of this initiative will come from the American Recovery and Reinvestment Act.
"Recognizing the differences in immune system activity before, during and after exposure to an infectious agent or vaccine will help in the development of safer, more effective therapeutics and vaccines," says NIAID Director Anthony S. Fauci, M.D. "This research effort also will contribute to the ongoing evolution in our ability to study the immune system."
Investigators will analyze samples from well-characterized groups, including children, the elderly and people with autoimmune diseases such as lupus. These groups represent diverse populations with respect to age, genetics, gender and ethnicity. The research teams will examine immune system elements of these populations before and after exposure to naturally acquired infections or to vaccines or vaccine components. The profile that will emerge of the body's response to vaccination will be based on the most sophisticated and comprehensive assays currently available. This will enable new approaches to examining vaccine safety, not just of individual vaccines but of the processes of immunization in general.
Their studies will focus on immune responses to vaccines against specific viruses and bacteria, such as influenza and pneumococcus, as well as to infection with West Nile virus. The investigators will take advantage of technological developments and advances in creating databases and developing mathematical models to identify and analyze the complex changes in immune profiles.
Each awardee will contribute to the establishment of a centralized infrastructure to collect, characterize and store human samples and analyze the large data sets that will be generated. Eventually, the centers will gather the information from this effort into a centralized Web-based database they will make available to the scientific community to promote and support human immunology research.
"This research effort represents a major expansion of efforts to define the principles of human immune regulation, instead of relying on findings from animal models that have limitations and cannot always be extrapolated to people," says Daniel Rotrosen, M.D., director of the Division of Allergy, Immunology and Transplantation at NIAID. "The knowledge gained also will improve our understanding of the range of vaccine responses in particular subpopulations, including newborns, young children, the elderly, patients taking immunosuppressive medications and those with underlying diseases of the immune system, such as allergy and autoimmune diseases."
The following six core institutions and principal investigators will participate in the inaugural program:

• Baylor Research Institute, Dallas – Jacques Banchereau, Ph.D.
• Dana-Farber Cancer Institute, Boston – Ellis Reinherz, M.D.
• Emory University, Atlanta – Bali Pulendran, Ph.D.
• Mayo Clinic, Rochester, Minn. – Gregory Poland, M.D.
• Stanford University, Calif. – Mark Davis, Ph.D.
• Yale University, New Haven, Conn. – David Hafler, M.D., and Erol Fikrig, M.D.

A portion of the funding for the centers will be dedicated to support smaller studies proposed by investigators outside the program, including pilot projects, the development of research resources and clinical studies.

###

The activities described in this release are being funded through the American Recovery and Reinvestment Act.
More information about NIH's Recovery Act grant funding opportunities can be found at http://grants.nih.gov/recovery/. To track the progress of HHS activities funded through the Recovery Act, visit http://www.hhs.gov/recovery. To track all federal funds provided through the Recovery Act, visit http://www.recovery.gov.
NIAID conducts and supports research—at NIH, throughout the United States, and worldwide—to study the causes of infectious and immune-mediated diseases, and to develop better means of preventing, diagnosing and treating these illnesses. News releases, fact sheets and other NIAID-related materials are available on the NIAID Web site at http://www.niaid.nih.gov.
The National Institutes of Health (NIH)—The Nation's Medical Research Agency—includes 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov.

A Shocking Study Reveals Women Tea Drinkers and the High Chances of Lupus and/or RA

http://www.eurekalert.org/pub_releases/2010-06/elar-wwc061710.php

This was just really shocking to me. This study was done in Europe. After all we have been told for years about the incredible benefits of drinking tea, especially teas such as green, black and white, and now this study shows tea drinking, especially in women could increase the chances of you developing Lupus and/or RA by over 70 percent! The above link gives you some insight into the study, and here is another link. I am anxious to see what else comes out about this. So far this morning, I have not found anything on the regular Lupus sites about it. But, I am sure there will be much information published soon. If you see anything about it, feel free to post and let us know.

Another Brand New Medication on the Horizon for Approval against Lupus

UCB and Immunomedics Inc. announced today that a new lupus drug candidate, epratuzumab, provided a significant reduction in disease activity in patients with moderate to severe active systemic lupus erythematosus (SLE).

See the URL:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=3273&zoneid=99


This has been a wondrous week when it comes to living in the world of those with Lupus, and other autoimmune diseases. The many years of research has paid off, and now we have at least 3 innovative, one of their kinds new medication to take away many of the horrible symptoms of Lupus, along with possibly slowing down or stopping the damage to organs, such as kidneys, heart, liver and the brain. I am so incredibly psyched about the possibility of being "more well" and less worried about how much damage the Lupus is causing to my vital organs. I have already had more than my fair share of complications due to the Lupus, when it comes to other issues I have health wise. No matter how "not serious" or how serious other entities in your life as far as illness may be, Lupus can definitely reek havoc with your body, and cause even a minor health problem to turn into a major detrimental situation very quickly. Did I ever learn that just a couple of months ago when I thought I was having a severe gall bladder attack that was requiring laproscopic surgery to remove it. Little did I know the Lupus, along with a nick in my liver during the gall bladder removal would put me on a very thin line of almost losing my life to complications.


I pray that no one ever have to go through what not just myself, but my husband and family went through for 8 weeks plus. Even after I was "out of the woods" so to speak and at home, all of us were extremely concerned I could suffer harmful set backs that would send me back to the hospital at any time. I am still have pain issues in my right side, with tenderness, and symptoms that could be related to continued issues with my liver and pancreas. I certainly hope not, but we are keeping a close eye on any developing problems.


Please continue to follow the great news though about these new medications. I will continue to keep you posted on information I receive about the continued breaking good news..   Rhia

OMG! Benlysta for Lupus went for FDA approval today!!!!!

OMG!!! OMG!!! Talk about AWESOME NEWS!! Glaxco Kline JUST SENT THE ONE AND ONLY LUPUS MEDICATION INTO THE FDA FOR APPROVAL TODAY!!! I am so totally excited. It could be approved where I could start using it by either later this year or very early in 2011. OMG!!! This is so incredible. The story follows! This brings tears of joy to my eyes. I have been praying this medication gets to the FDA and gets approved soon. Anyone with Lupus knows just how incredible this is....http://news.morningstar.com/newsnet/ViewNews.aspx?article=/DJ/201006100800DOWJONESDJONLINE000465_univ.xml

Sign Petiton to tell Wal Mart NOT to do away with the Fabric Dept.

This is just nuts. Wal Mart in redoing their stores made a stupid decision to stop carrying fabrics. They made an "executive" decision to no longer have a fabric dept., which is nuts! Many small communities like mine, have NO other place to purchase fabrics without going to Dallas, buying online (which sometimes is nuts if you only need a small amount of fabric, or you need it NOW when working on a project). I found a petition online to sign, and other ways to let Wal Mart know they need to continue to keep their fabric dept. open ESPECIALLY in smaller communities where there is no other place to purchase fabrics.


http://www.petitiononline.com/savefab/petition.html

The link is above... please sign and pass onto others who will be affected by this...

Thanks so much Rhia

Cheapskate and I Love it!

http://www.aarp.org/money/budgeting-saving/info-11-2008/pay_less_for_anything.html

Being the coupon clipping, bargain hunting, watch something until it goes on sale down to the price I think its worth, fanatical bargain, cheapskate of the world .....LOL... seriously I share this link with you. Nothing gives me more pleasure than saving large bucks on things we need daily, as well as those cool clothes I want but refuse to pay top dollar for. So, yes I clip the Sunday paper coupons, I now also print them from the internet, I watch the major pharmacies weekly ads and clip their store coupons, I use the free items coupons from our local market, and I watch clothing stores coupons, percentage off sales, and when it feels like it is a true bargain for my budget I then rush in to pluck up those things at many times a tiny fraction of it starting price. Talk about a high when I go in to my local pharmacy and save 70.00 plus between sales, store coupons and manufacturer coupons. You can clean up on things like vitamins and supplements with buy one, get one free, a store coupon and one from the manufacturer. Suddenly that 40.00 bottle of supplements goes down to 5.00! IF you feel like it is lots of work, wrong... once you get your system down as far as watching for, clipping them, looking at weekly ads (now some of the stores actually put the ads that are coming out on Sunday, in the paper and online days in advance so you can be ready with coupons in hand on Sunday when the sales starts.)