By Ashley Smith
Monday, November 09, 2009 at 4:55 p.m.
Read more: Local, Education, Community, Health, State, Scleroderma, Senate, House of Representatives, Karen Lovingier, National Institutes of Health, Missouri
KIRKSVILLE, MO. -- Fact Finder discovers advocates of a disease accounting for 300,000 new diagnoses a year are seeking more funding for research and education.
Scleroderma is a chronic disabling tissue disease. People living with the disease are typically women of child-bearing age who suffer illnesses ranging from acid reflux to heart failure.
Fact Finder learns scleroderma also causes hardening of the skin.
“My face has been affected, my nose has shrunk, my mouth has shrunk, it doesn't open enough. My dentist just kinda cringes I think when I walk in the dentist office because it's a very painful ordeal because my mouth just doesn't open,” said Scleroderma Patient Karen Lovingier.
Lovingier tells Fact Finder she was diagnosed with the disease in 2000 and lost her job because of health issues related to scleroderma.
$460 million is spent every year on battling the disease that has no known cause or cure.
“We've had funding with the NIH (National Institutes of Health) which has been wonderful but it's just leveled off and plateaued. The stimulus package has come in, there's been a big influx into the NIH. We have not seen it yet and part of that is very few people know what scleroderma is or have heard of it,” said Lovingier.
50 scleroderma patients from across the nation including six from Missouri traveled to Washington DC to speak to local law makers including Blaine Luetkemeyer, Kit Bond, and Claire McCaskill.
“To be able to sit and talk to people and have them listen to you about this disease and how important it is to get more research and funding is just amazing just to be able to be heard,” said Lovingier.
Lovingier tells Fact Finder she took almost 200 pages worth of signatures from Northeast Missouri to our nation’s capital.
She says they now have 67 representatives and six senators signed on as co-sponsors of the bill. The house bill is H.R. 2408 and in the senate it’s S. 1545.
Karen Lovingier is the head of the local scleroderma support group. If you would like to contact Lovingier, her phone number is 660-332-7820 and her e-mail is lovinka62@hotmail.com.
