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.
Thank you for reading.
Memory fails me as to how to post a link, but I want to share this web address.
Offshore drilling....
Thanks for posting this. I've treated a woman in Saraland for MS. She tells me there is also a high incidence of MS in the Mobile area.
I've long suspected a possible causative agent from something released into the air by the paper mills. I've no research that indicates similar clusters of other or similar diseases in other areas with paper mills.
An MS patient in Colorado once told me that there were six cases of MS in her subdivision. That is almost statistically impossible for so many to contract the disease in such a small area without some environmental causative agent. She told me they all had lived in the neighborhood for a fairly short time. Unfortunately, she died soon after I met her.
Since this article is part one could you ping me if and when there are subsequent articles printed. Thank you.
We were told that my MIL didn't have the genetic form of ALS and to not be concerned for our daughters, yet this brings it up in a different light.
Thanks for posting this. I've treated a woman in Saraland for MS. She tells me there is also a high incidence of MS in the Mobile area.
I've long suspected a possible causative agent from something released into the air by the paper mills. I've no research that indicates similar clusters of other or similar diseases in other areas with paper mills.
An MS patient in Colorado once told me that there were six cases of MS in her subdivision. That is almost statistically impossible for so many to contract the disease in such a small area without some environmental causative agent. She told me they all had lived in the neighborhood for a fairly short time. Unfortunately, she died soon after I met her.
Since this article is part one could you ping me if and when there are subsequent articles printed. Thank you.
When is somebody going to investigate those areas where there is a statistically significant LACK of a certain (any) disease?
Finding out why might result in a cure.
I will ping you. So far, it's had brief flashes on the news and whispered rumors at the grocery store.
Growing up I only knew one person with MS (none with ALS, only read about Lou Gehrig), seems like now almost everyone I meet knows someone with MS and/or ALS..
As a child visiting my grandparents in Mobile, we could always tell when we were close because of the smell. I've always associated the paper mill smell (rotten eggs?) with spanish moss! Funny how associations happen in a young mind.
Dr. Nancy McLeod was my MIL's neurologist. Never have I met a more compassionae doctor, and I've met my share with my dads illnesses. I was with my MIL when the doc said it was time for a vent if she wanted it, which my MIL refused...only opting for a feeding tube.
Excellant point. I hope someone at the CDC or whatever powers that be, are paying attention.
Statistically insignificant.
ping
"When is somebody going to investigate those areas where there is a statistically significant LACK of a certain (any) disease?"
I suspect the CDC or state health agency would take the easy out and say, "if it ain't broke, then don't fix it". Why use valuable resources to look at something healthy. Still, your point is well taken.
In post six above I mentioned six cases of MS in a subdivision. Actually, it was six cases in only 13 homes. None of the people involved had MS (diagnosed) before they moved to this cul-de-sac. What are the odds of this happening without some common external causative agent?
"When is somebody going to investigate those areas where there is a statistically significant LACK of a certain (any) disease?"
I suspect the CDC or state health agency would take the easy out and say, "if it ain't broke, then don't fix it". Why use valuable resources to look at something healthy. Still, your point is well taken.
In post six above I mentioned six cases of MS in a subdivision. Actually, it was six cases in only 13 homes. None of the people involved had MS (diagnosed) before they moved to this cul-de-sac. What are the odds of this happening without some common external causative agent?
I suspect the CDC or state health agency would take the easy out and say, "if it ain't broke, then don't fix it". Why use valuable resources to look at something healthy. Still, your point is well taken.
The government method is usually "if it ain't broke, fix it till it is."
Those 35 cases don't include those who have already passed, as far as I know. The typical time between diagnosis and death is only a few years. I'd like to see the numbers on all cases, current and not current, if for nothing more then to calm my nerves. Lot's of our seafood comes out of that bay.
YOur link does not work.
As a small town family physician, I have documented "hot spots" around the area for several environmental cancers. The CDC is too busy with that butt-fupping illness to bother with my data. We have been drinking water from N. Wisconsin for 15 years, FYI
I spent half my life in the water of the Bay since it was my front yard. I hope I don't get sick.
Our girls don't have the same experience tho. When my Husband was young he got a terrible ear infection that they said came from the Bay, so we just never took the kids, but only for that reason. (instead of the Bay, they got infections from pools, lol)
As far as the ALS/MS issues, sounds like maybe more of an air thing then water thing to me. It is my understanding that Mobile Bay 'flushes' out much quicker then other similar Bays.
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