Good News for Lupus Research

Lupus Foundation of America Applauds Congress for Funding Vital Lupus Research and Education Initiatives
December 17, 2011

(Washington, DC) The Lupus Foundation of America (LFA) applauds Congress for including vital lupus funding in the Fiscal Year 2012 Omnibus Appropriations Bill, which passed today, Saturday, December 17. The Military Construction and Veterans Affairs, and Related Agencies Appropriations Act, 2012, includes $50 million for the Peer Reviewed Medical Research Program (PRMRP) at the Department of Defense; $1 million to continue the national health education program on lupus for health care providers through the Health and Human Services Office of Minority Health; and more than $4 million for the National Lupus Patient Registry conducted through the Centers for Disease Control and Prevention.

Lupus continues to be one of the disease research areas that qualify for funding under the PRMRP Program, which consists of $50 million that has been appropriated for PRMRP in 2012. This will enable funding of additional critically-needed studies on lupus. Through its advocacy initiatives that began in 2003, the LFA pioneered efforts to have lupus included as a disease area eligible for research funding through the PRMRP. The LFA has continued to demonstrate to Congress the relevance of lupus research to military personnel and their dependents. To date, 11.8 million has been awarded to lupus research by PRMRP as a result of these efforts.

The legislation includes $4 million included for the National Lupus Patient Registry, bringing the total funding to $18.5 million for the study. In 2003, the LFA worked with Congress to establish the National Lupus Patient Registry, designed to more accurately estimate the prevalence and incidence of lupus in the United States. The National Lupus Patient Registry will help us better understand and measure the burden of illness, the social and economic impact of the disease, and to stimulate additional private investment by industry in the development of new, safe, tolerable and effective therapies – and eventually a cure – for lupus.

In 2006, the LFA secured Congressional support for the Lupus Research, Education, Awareness, Communications and Healthcare (REACH) Act. Among its provisions, the legislation called for funding programs to improve health professional education. The legislation provides $1 million to for the national health provider education program on lupus, bringing the program total to $4.6 million since 2009. The education program addresses a key goal for the LFA’s advocacy efforts, to improve early diagnosis and treatment of lupus.

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Lesson Learned

Well, today I learned another valuable lesson. When typing your blog, use Word. I had just finished a pretty good and long blog and poof, a Firefox glitch and poof, gone. So I will update the new page another day.
Have a Good Weekend Everyone!

First Things First

It took five days to diagnose me with Lupus.  I went two hours away to another hospital, on the advice of a Doctor that resides in my town and work at a private hospital.  When he called me back to give me his advice, he asked how I felt about going to Charlottesville, Va. and I thought, well, if he didn’t trust any other Doctors locally, then I don’t have a problem going two hours away.  At that time, I had gone into gangrene on my two pointer fingers and the first and fourth digit on my left foot.  That doctor found me a doctor and had me an appointment on Monday.  But he said if I couldn’t stand the pain, that I should go ahead and check into the emergency room up there.  Boy, you should of seen those nurses and doctors moving quickly when I checked into the ER the next day (Saturday).  When I got out of the shower that morning, I was in tears and lots of burning pain.  He said that I should go ahead and check into the ER so they could give me some help.  So we gather the kids, took our time, packed my bags and drove up there and eat out when we arrived and checked in.

It took them five days to diagnose me.  The final straw was the biopsy from the rash.  I had several teams of doctors, one for the brain, lungs and organs, Rhuematology and I don’t remember the other names but it was five different ones. 

Here is a list of test that Rheumatologist run:

  • RA Test
  • SED Rate or ESR (Erythrocyte Sedimentation Rate
  • C-Reative Protein (CRP)
  • Rheumatoid Factor (RF)
  • Anti-CCP
  • CBC

I am sure there other things that they look at, but that is the beginning and I will talk about them as we go.  If I remember correctly, there is a list of 14 symptoms and I had 11 of them.  So Thank the Lord that they caught mine ahead of time.  They caught it before it had started to affect my internal organs.  My nurses started a research file copies for me, not only for me to learn about my diease, but so my family and friends could understand too.  Too little knowledge is known about Lupus and I hope that with my blog and experience, we can get the word out more.

 

Till next time……

 

A flare up

A flare up

A picture of my feet and legs showing swelling and you can barely see the rash. This was a few months ago.
Scarey!

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