Browsed by
Category: Uncategorized

Have lupus? The Lupus Alliance of America needs your help

Have lupus? The Lupus Alliance of America needs your help

In the beginning of my illness, I was told that I had lupus. I immediately went home, cried, then read everything I could get my hands on. I was online reading medical journal material, lupus blogs, lab reference sites, everything and anything (except for sites with no reputation, and the ‘cure all’ sites, ugh).

I joined a support group for people with lupus and friends and family of lupies. We shared stories of pain, grief, frustration, triumphs, symptoms gone mad, remissions, and bonded because of a common link-chronic invisible autoimmune disease: lupus. I have never in my life met so many strong women. Of course when I got sick I felt very alone. I soon found out that there were thousands of women and dozens of men on this site who were going through, or had gone through everything I was experiencing. I learned how to stand up for myself at the docs, how to keep records and manage them, find out where to look for lab explanations and the many acronyms, and most of all I learned that I COULD survive this. I could even conquer it some day. After about a year and a half, I let go of that group. It wasn’t because I didn’t enjoy it anymore, or that the docs told me they didn’t think it was lupus. It was just time. As I was leaving, dozens more were joining. Each one as scared as I was that first day in the room.

I will always advocate for a cure for lupus. Whether I have lupus or not it has a place in my heart forever. It is such a devastating disease, and was one of the most overlooked.

Now lupus is finally getting out there getting talked about and people in the entertainment industry are advocating for research and a cure. Say what you will, but when famous people stand behind a cause, people listen. Lupus voices are being heard. And a new drug! The first one in 50 years!!! Can you believe that? 50 years. It’s just unforgivable that it was ignored for so long, but thank God there is a new medicine.

We should all keep talking and bringing awareness to this disease and other autoimmune diseases; Multiple Sclerosis, Ankylosing Spondylitis, Antiphospholipid Antibody Syndrome, Graves Disease, Chron’s Disease, Dermatomyositis, Meniere Disease, Rheumatoid Arthritis, Insulin dependent Diabetes, Mixed Connective Tissue Disease, Schleroderma, Myasthenia Gravis, Ulcerative Colitis, Cardiomyopathy, Addison’s disease, Vasculitis and many, many more.

I’m gonna stop here and just ask, if you have lupus or are a parent of a child with lupus, will you please take the survey? It’s put out by The Lupus Alliance of America, it takes about 30 minutes and it’s results will help them learn what people with lupus are in need of, and the data will help spread awareness and speak of what effects lupus has on the people with the disease. Remember, awareness is key. It’s not going to be able to be swept under the rug anymore. It needs immediate attention, more funding for research to find a cure. Check this statistic out, it’s from the AARDA site

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).(AD: autoimmune disease)

You can go directly to the survey by clicking on the survey logo below.  At the bottom of the page is a link to the Lupus Alliance of America’s website.  Thank you.

Until next time,

2michelle


Survey

In the last ten years Lupus has finally started to get the attention the over 2 million Americans who suffer from it have long dreamed of.  From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns and more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than
ever before. But more work is yet to be done.

This is a very important time for lupus research and the Lupus
Alliance of America needs your help. To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus, The Lupus Alliance of America, its affiliates and L.I. CW Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.

JC VanderPutten
Lupus Alliance of America

http://www.lupusalliance.org


New Lupus Drug on the Horizon?

New Lupus Drug on the Horizon?

BENLYSTA.  That is the name of the potential new drug for lupus; the first in 50 years!! I am excited and I don’t even have lupus 🙂  Lil humor here…  So far it has passed the first clinical trial and it’s heading into the next one.

Here is an excerpt from the President and CEO of the Lupus Foundation of America:

“We look forward to hearing the results, this fall, of a longer-term Phase III clinical study of BENLYSTA. The data from both studies will be evaluated by the U.S. Food and Drug Administration (FDA). Should the FDA ultimately approve BENLYSTA, it would become the first drug successfully developed to specifically treat lupus since the disease was discovered more than a century ago.

I happened upon this yesterday over at On the Road to a Cure, the LFA’s blog.  It’s a great resource for info on everything lupus.  They also have an extensive list of lupus blogs on their blogroll, if you haven’t been over there you should go check it out.

And now for this amazing, exciting, historic news, here’s President and CEO of the Lupus Foundation Sandra C. Raymond to tell us all about it!!

site problems…

site problems…

I just found out that my site is broken if you are reading this from Internet Explorer 6…I guess You Tube videos are to wide for this fixed theme so I’m probably going to change it instead of get rid of the video.  I love the way this theme looks 🙁

I’ll be working on it…

Just gettin my ad on…

Just gettin my ad on…

Hey all! It’s been a few days since I’ve been online. You wanna hear my laundry list of reasons?? First I wanna talk about the ads on my site. (my brother is probably reading this and rolling his eyes) I decided to put some ads on here to try and generate some change as in nickels and dimes change, not changing the world change. But- I had a big problem with the idea of me not getting to pick and choose the ads…hurumph.

Anything I type here will generate ads by content. Since I do write about Lupus, RA, and autoimmune issues there will be lots of ads pertaining to those issues. I have a HUGE problem with any company touting a cure. There is no such thing yet. That’s part of my reason for starting this blog was to raise awareness and get people talking. That and an outlet for me to do the talking too. 🙂 I’m a big advocate for the Lupus Foundation and the Arthritis Foundation; participating in fund raisers and writing my government peeps when I need to.

To sum this post up in a nutshell, if you see an ad that is promising a cure; I do not endorse that whatsoever. There will be ads for reputable sites and good information, it’s your call.

I am so tempted to type in poop (i just did) and see what comes up on the right side of the page…

Until next time

Michelle

sick…

sick…

I can’t believe I caught the bug. My granddaughter got sick 2 days ago and her fever finally spiked and fell last night. I woke up this morning and whammo. Body aches, head ache, uggghhhhh!!!! I vow to stay in bed today and take care of myself…with my laptop. I’m such a nerd.

been gone

been gone

I haven’t blogged for a few weeks, been pretty sick.  I’ve got a lot to say, but haven’t blogged it because I didn’t want it to be depressing and whiney, LOL.  I’ve got a few things to do to fix this blog, first one being the blogroll.  I have links there instead on other blogs, ooops.  🙂

I’ll be back.

%d bloggers like this: