Only moments away from the best year ever....

First of all a very Merry Christmas, Happy Hanukkah, Happy Kwanzaa, a great holiday in whatever you celebrate to this season, and the best ever New Year to you all. As some of you know I'm a strong believer of following your gut feelings, and my gut is telling me that this coming year will be the best ever.

Now for some news.

1. RTX has been approved by Health Canada for the treatment of Wegener's. Well we're a little behind (the US approved it last year for WG) but better late than never. Now it is not 'off label' use for Wegener's so if you have insurance it's a viable option... especially since the only two real heavy hitters to stop WG in its tracks during a flare - cytoxin (a.k.a. cyclophosphamide or CTX) and Rituxin (a.k.a. Rituximab or RTX) so yeah, we're legal on both sides now.


2. I'm almost finished putting together my supporting material for our 'change the world' moment. I will be directing you to a new site in the not too distant future to pick up your stuff for "Find the Common Thread Pajama Day" for Autoimmune Awareness. If you're not sure what I'm talking about here's the short version (I know, who am I kidding, I am incapable of writing anything in 'short version')...


... I think that the only way we as a society will make any significant - quantum leaps - forward with finding a cure or anything of the sort, is to widen the focus from our 'little' (not so if you're in it), rare diseases to looking at autoimmune disease in general and working towards raising awareness and finding a common thread for all AI disease. Here are some interesting quotes from AARDA (aarda.org)


"Autoimmune disease.......offers surprising statistical comparisons with other disease groups.
• NIH estimates up to 23.5 million Americans have an AD. In comparison, cancer affects up to 9 million and heart disease up to 22 million.
• NIH estimates annual direct health care costs for AD to be in the range of $100 billion (source: NIH presentation by Dr. Fauci, NIAID). In comparison, cancers costs are $57 billion (source: NIH,ACS), and heart and stroke costs are $200 billion (source: NIH, AHA).
• NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).
• The NIH Autoimmune Diseases Research Plan states; "Research discoveries of the last decade have made autoimmune research one of the most promising areas of new discovery."
• According to the Department of Health and Human Services' Office of Women's Health, autoimmune disease and disorders ranked #1 in a top ten list of most popular health topics requested by callers to the National Women's Health Information Center."

also....

"Autoimmune disease is one of the top 10 leading causes of death in female children and women in all age groups up to 64 years. of age.

• A close genetic relationship exists among autoimmune disease, explaining clustering in individuals and families as well as a common pathway of disease.
• Commonly used immunosuppressant treatments lead to devastating long-term side effects.
• The Institute of Medicine reports that the US is behind other countries in research into immune system self recognition, the process involved in autoimmune disease.
• Understanding how to modulate immune system activity will benefit transplant recipients, cancer patients, AIDS patients and infectious disease patients.

Autoimmune disease.....faces critical obstacles in diagnosis and treatment.

• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

February 29, 2012 - Pajama Day for Autoimmune Disease Awareness - Let's find the common thread! The wave will start with us and in a couple of years you can tell your friends you were part of the wave that started in 2012 and changed the world for the better.


I will continue to muse about Wegener's here... can't ostracise the already ostracised child. Us rare Weggie birds need to flock together and use each other's chemotherapy thinned plume to support and comfort each other. It's the best way to pull through to the right side of the fence. Feel free to contact me if you have questions (I don't know the answers, but I'm a great finder of the helpers needed - and I have plenty of opinions as you can see) or if you want to get involved in any way of raising awareness and getting the ball rolling on the bigger picture - Pajama Day. Find the Common Thread....