Posted on 03/01/2005 6:25:43 AM PST by sweet_diane
Why is a small area of South Alabama home to such a high number of cases of a rare disease?
In part one of our investigative report, we talked to two families who have never met, but have been affected by the deadly disease called ALS also called Lou Gehrig's disease, which attacks the muscles.
The peaceful waters along the eastern shore are calm and tranquil.
But could Mobile Bay, and the air and soil around it somehow be factors in the unusually high number of ALS cases?
Susan Calhoun: " Here he is, he's worked all his life. He's in the prime of his career and it just stopped. It stopped on a dime."
John Calhoun of Spanish Fort died from ALS in December.
His wife says it came out of nowhere and strongly believes the environment along the bay played a key role.
Calhoun: "I fully believe that there is a gene. I think it's connected genetically in some form or way and I feel like the environment triggers that gene."
Bert Woodard of Satsuma has been living with ALS for 21 years now and may be one of the longest living survivors.
Doctors told him an ATV accident triggered the first onset of ALS symptoms.
But what puzzled doctors is when he went through testing, his body had a very high level of mercury…much higher than normal, acceptable levels.
Where it came from remains a mystery.
Bert Woodard's Mother Lura Woodard: " He doesn't know, he doesn't have any proof but we think that has a lot to do with it, the paper mill chemical companies, mercury and water maybe...we just don't know."
We took Susan Calhoun and Bert Woodard's theories to Kelly Ivy.
He's not a doctor or scientist but chairman of the Southland Gulf Neuromuscular Association in Montgomery.
Ivy's daughter has the disease.
Chairman of Southland Gulf Neurological Association Kelly Ivy: "We show a total of 35 cases in a corridor band from Weeks Bay to Saraland. 35 cases in a population of approximately 61 to 63-thousand."
For the past year, Ivy has been tracking those cases to see if there are similarities or connections.
There are 8 ALS cases in Spanish Fort, 11 in Daphne and Fairhope, 2 cases in Bay Minette, one along the causeway, and 8 cases stretching from Point Clear to Bon Secour.
This does not include the 5 confirmed ALS patients in Saraland and Satsuma.
He believes what connects all the cases can be found in Mobile Bay.
Ivy: "The prevailing winds tend to come fro the south and the southwest meaning, they're coming straight off salt air fresh, salt air, bathing the eastern shore daily, fresh, saline salt water...and yet this hideously high incidence."
In a nutshell, Ivy believes the air from the Mobile Bay could be carrying "something" that might trigger a hidden gene in some people who are prone to have ALS.
There are many theories about why there are so many ALS cases near Mobile Bay.
With no clear answers, we turned our attention to Alabama's state toxicologist Dr. Neil Sass.
Dr. Neil Sass: "I'm not saying that it is or it isn't. If it were a true environmental contaminant that's causing this, my first instinct would be why do we have so few cases that we do? Another thing is why does it appear everything is on the east side of the bay when the majority of the industry is on the west side?
Dr. Sass says a team of epidemiologists, genealogists and toxicologists are aware of the ALS cases in Mobile and Baldwin counties.
They met with a group of ALS patients just last week at the University of Alabama in Birmingham -- one of the most respected medical research institutions in the nation.
Doctors say they will launch a major medical research project where they will study the ALS cases along the coast, and try to determine if indeed there is an "ALS cluster".
Dr. Sass: "Cluster is a very scientific term and we do not have data to say that there's a cluster. There are cases there, we don't know how that compares with anywhere else in the state."
The team from UAB will be looking for specific information where ALS patients worked and lived for the past 10 years.
Dr. Sass offers this advice to anyone who may be worried.
Sass: "Most people that all people should go about doing what they do everyday, the way they want to live them. If there is something going on we hope to find out what it is.
For Susan Calhoun, and other families affected by ALS, they say it's a step in the right direction.
Calhoun: "A cure is around the corner I really believe that and I think they might find it in our area"
Medical experts say they wish they could agree.
Dr. Sass: "At this point there is no evidence knowing "anything" that causes/triggers ALS. That's what we would like as an ultimate goal is to hopefully to find out, but a lot of time and effort has been put forth around the world and so far, nobody knows what causes ALS.
The research team from UAB will be sending a letter to every neurologist in the state of Alabama.
It will explain what the team is doing and ask for information to track every case of ALS and see how it compares to the number of cases in Mobile and Baldwin counties.
I understand your concern for "hot spots" and possible environmental cancers. My brother told me that folks in his western Kentucky hometown were dropping like flies from cancer. A bit later the EPA came in and closed down the city's water system until corrective actions were taken. I presume the city complied. I still take bottled water when I visit him.
Any info you can share about your sisters research would be appreciated.
Don't let ALS scare you.. Whatever God's plan, it is perfect, we just may not see it for the perfection it is.
You know, I've mostly ignored her rantings, but have given her data more than lip service. She's in Cali now, but I'll see what I can come up with and let y'all know. Her ex-hubby is an environmental lawyer and she was trying to get him to file a class action suit. Maybe they can send me what they've got for analysis.
That would be great. There's more local info on the wkrg.com website including a case of a young man who has lived with ALS for 21 years.
Lyme disease is very difficult to detect because there are so few bacteria present in the body. PCR techniques have made it easier to detect but, it is still frequently missed.
"(Reading medical journals will drive one crazy) "
LOL, I have all the books on Lyme disease and one says that when the MD's tells you to go see a shrink, that's when you know for sure that you have Lyme disease.
On the advise of one MD (she is in Dallas and is known as 'The Lyme Queen'), I went to Mexico and bought Rulid, which at the time, was not FDA approved for sale in the USA. Like all antibotics, it helped with my symptoms.
When you're sick and can't get well, reading symptoms will drive you nuts.
For example, in '61 I went to submarine school in New London, Connecicut. New London is in Lyme County, Connecicut. I was stationed in New London for two years. See what I mean. (The mind does funny things)
I drove through Mobile, and I wanted to look around and maybe spend the night. However the stinky air pollution was so bad, I couldn't wait to get through there and on my way. Maybe these health concerns will prompt clean up.
I remember seeing a television special a long time ago about a Foster Grant sunglasses factory that was abandoned and a bunch of kids used to play there. None of the kids ever became sick, but their kids and grandkids did.
I forget the details as this was some ten years ago at least.
Ya shoulda smelled it 30 years ago...it's way better!
Mobile and the surrounding area is rich in history and I'm so sorry the 'stink' kept you from enjoying the area. Paper mills are part of that history, those that didn't farm or fish made paper.
Haven't all the papermills in the area shut down now?
Seems everyone was laid off or retired, so I suppose they are.
Again, I'm no good at posting links. I did find this article on the alsa.org site.
Here is your link.
Thank you sweet_diane and blam for this article.
Diane, you have Freep mail.
Just curious: Do you have benign fasciculations?
No, not really. It's a long story...LOL
We just have too much (medical) information at our fingertips with the internet. I scared the beejesus outta myself a few years back.
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