Jeffrey Cade, 46, the son of Jane Dignam, has ALSP, a rapidly progressive and fatal neurodegenerative disease, with onset between 38 and 48 years, Dignam said on Wednesday in Springville.
Without a bone marrow transplant within 1-and-half to two years Cade will die.
In trying to get a bone marrow donor his two siblings were tested, but also carry the same gene CSFR , one gene that causes ALS. ALSP is genetic and the whole family was tested with an MRI scan and genealogy testing. Dignam was negative but her children were positive.
Throughout the world there are 10,000 ALSP cases that are reported, but so often, like in Cade’s case, he was initially misdiagnosed as having Multiple Sclerosis, MS.
According to Dignam, 22 years ago, in 2000 and 2001, a medication that dramatically helped patients with ALSP was presented by doctors and patients to the U.S. Senate, but each time, the Senate determined they needed more information about the drug.
In the meantime people in that age bracket are dying in the prime of life.
A fundraiser with Sister’s of Hope Foundation END ALSP will be held on September 17 at the Porterville Fairgrounds, from 5:30 to 11 p.m.
The money for the fundraiser won’t go to Cade, it will benefit medical research.
There will be dinner, dancing, and a silent and live auction, with entertainment by the Classic All Stars and A.J. Fox from KSEE 24 News serving as the Master of Ceremonies.
The event will feature hors d’oeurvres, tri-tip and enchilada dinner and dessert by Catering With Noel. A no host cash bar will be provided by the Eagles Lodge.
“It’s been a four year battle,” said Dignam,”and Springville and Porterville businesses have been so helpful in supporting our fundraiser on September 17.”
For more information call Dignam, 559-310-0237.
ALSP affects the cognitive thinking response, and there’s heaviness in the legs, along with markedly slurred speech. At onset Cade couldn’t talk properly.
And at first the doctors thought it was a stroke, and then they did more testing.
“He has now had 20 spinal taps,” Dignam said, “and they are painful.”
Colorectal cancer is the third-most-common cancer in both men and women in the United States and is the second-most-common cause of death from cancer, behind only lung cancer. Because most cases of colon cancer take years to develop, we have an opportunity with regular screenings to not only catch cancer at an early, curable stage, but with colonoscopy, we can also remove the precancerous polyps and prevent cancer from developing.
As we commemorate Colorectal Cancer Awareness Month, I want to make sure everyone is aware of the latest guidelines on colorectal cancer screening. In 2021, the U.S. Preventive Services Task Force updated its recommendations on colon cancer screening to offer screening at age 45 for all average-risk adults. Part of the rationale to lower the age for screening is that despite improvements in the overall trends of colon cancer cases and deaths over the past few decades, we have seen as much as a 15% increase in the number of colorectal cancer cases in adults ages 40 to 49.
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While we say that the best screening option is whatever test has the highest likelihood of a patient completing it, there are two major testing approaches most often used in the U.S. that are supported by the highest-quality evidence: colonoscopy and stool-based testing.
The benefit of a colonoscopy is that it is both diagnostic and therapeutic. This means that whatever we find during the screening, such as precancerous polyps, we remove at the time of screening.
Stool-based testing strategies, such as an annual fecal immunochemical test (FIT) or a multitarget stool DNA test every three years, are also highly effective strategies. However, stool-based testing is considered a two-step strategy, because any positive test still requires a colonoscopy for follow up to remove any polyps. Less commonly used screening tests include flexible sigmoidoscopy, CT colonography or colon video capsule. These tests do not have as much evidence supporting their use and should be reserved for patients unable or unwilling to undergo colonoscopy or annual FIT testing.
When deciding which screening approach to use, patients should also consider their overall risk for colon cancer. Stool-based testing should only be used by “average-risk” patients, so anyone at higher risk for colon cancer based on a personal history of colon polyps, a family history of colon cancer or an underlying medical condition such as inflammatory bowel disease should not use a stool-based screening option and should instead undergo a colonoscopy. Depending on a patient’s risk factor, the age at which to start screening could be younger than 45, and this decision is best made with the input of a primary care physician or a gastroenterologist.
How UVa Cancer Center can help
The UVa Cancer Center — one of just 52 National Cancer Institute-designated comprehensive cancer centers in the U.S. and the only one in Virginia — offers exceptional screening and care for colorectal cancer. UVa provides the full range of colorectal cancer screening options for patients, including high-screening colonoscopy to patients, as well as diagnostic colonoscopy for patients with a positive stool test. Our gastroenterologists perform high-quality colonoscopy and offer advanced endoscopic options for patients with complicated adenomas.
For patients who need surgical care for colorectal cancer, U.S. News & World Report rates colon cancer surgery at UVa as “high performing” – the best possible rating. To learn more about colorectal cancer screening and treatment options at UVa, visit uvahealth.com/services/colon-health.
Dr. Esteban Figueroa is a gastroenterologist at UVa Health.
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