posted
I just saw this on CNN's House Call this AM
Veterans in Focus Battling Lou Gehrig's Disease
Military veteran with ALS interviewed said that the military has agreed that you are at twice the increased risk to develop ALS than the general population.
Dr. Sanjay Gupta interviewed Dr. Lucie Bruijn, PHD, scientific director ALS Center says there is most likely an exposure in the environment along with a genetic predispostion. Majority of cases think there is an environmental factor. They are actively looking at this through a registry and testing these people with DNA testing. New breakthrough is a second gene just identified. Research going on is trying to make new motor neurons with stem stells from patients own.
I'm curious how many in their registry are tested for infectious diseases!! How about a tickborne infection.... mycoplasma or borrelia?
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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posted
Ok I just found the transcript. It's funny what when you compare what my lyme brain heard and remembered vs what was actually said. That darned memory and delayed processing!! At least I got the docs name right. Lol.
***** THOMAS CUTTY, VETERAN: My name is Thomas Cutty. This job takes two hands. I'm a sufferer of ALS. This is a disease where one day you wake up and you can walk, and the next day you can't. And once you lose it, you never get it back. It's known as Lou Gehrig's disease, which means we've known about it since at least the '30s.
LOU GEHRIG: Today I consider myself the luckiest man on the face of the earth.
CUTTY: And nobody's done anything about it. When I heard I had Lou Gehrig's disease, I thought, like polio, didn't we cure that in World War II? I was diagnosed with it in February on Valentine's Day. I was hoping for chocolates, but I'll take what I get.
There have been recent studies that have proven that if you are a veteran, your chances of developing ALS are double that of anybody else. Recently, the VA agreed to count ALS as service-connected for all veterans, regardless of when you served. I applied for the paperwork in March. This is one of several. I've been told it can take up to a year for them to make a determination on what they're going to do.
Meanwhile, I've been progressing. Several times, I've fallen and landed on my face. People lose the ability to talk. You can't tell your children you love them. I'm slowly being trapped in my own body. It is scary.
What I do all day long is I tell myself in six months, I will probably be in much worse condition. And in six months, I would give anything to be where I am today. So, today I'm happy with what I have.
Most days I can't open jars. We have such a short life span that a soldier who is diagnosed today could be gone in less than two years. With the number of people that we've brought on since we started the war on terrorism, I mean, the numbers for people living and dying with ALS could just triple.
The way we are in the military, if you show us an enemy, we'll defeat it. And every American that wears a uniform feels that way. It's really hard to identify what you're fighting. I'm just fighting to stay alive.
(END VIDEOTAPE)
GUPTA: ALS or Lou Gehrig's destroys nerve cells in the brain and spinal cord, which leads to muscles wasting away, leaving people unable to walk and eventually unable to breathe as well. There's no known cause, there's no known cure, but there are researchers working around the world to find one. And that's what we want to bring to you today.
Joining us from London is the scientific director and vice president of the ALS Association, Dr. Lucie Bruijn. Thank you very much for joining us.
LUCIE BRUIJN, PH.D., SCIENTIFIC DIRECTOR, ALS ASSN.: Thank you.
GUPTA: You know, this is something as I mentioned I wanted to do for some time. I was sort of so struck by this. You heard Thomas Cutty there in that piece saying if you're a veteran, you're twice as likely to develop ALS as compared to someone who's not a veteran or served in the military. You're working on studies sort of around that issue. Why would that be?
BRUIJN: Well, it's an interesting why and it's a very difficult one to resolve very quickly. It's likely that there must be an exposure in the environment. But on top of that, it's probably an individual genetic susceptibility. So it's a gene environment interaction most likely.
This does give us an opportunity, however, to try and work this out. As you indicated correctly, most of ALS is completely unknown. There are about 5 percent to 10 percent of the cases that are passed through families, for which we know some of the genes, but the majority we really are very unsure. We do think there are environmental factors.
We have been able to, through this finding that there is a susceptibility in the military, to build registries through the Veteran Affairs and to really get all the cases that we can as well as their DNA to try and match the two together. So we are actively looking at this, but it's certainly challenging.
GUPTA: You know, it's interesting. You heard Thomas Cutty again say that he thought this had been cured, you know, when he first was diagnosed with it. He thought that had gone the way of polio. And in fact, a lot of people don't know a lot about ALS. They know about Parkinson's. They know about MS, but not ALS. Why doesn't it get the same attention?
BRUIJN: Partly because the numbers are small. However, I quickly remind you as he said in the clip, two to five years is generally the life span. And we should really compare it with Multiple Sclerosis, which is better known. However, there are more people with the disease because they live longer. So, this is the challenge. And this is why it's so important through our veterans that people become more aware of the disease.
GUPTA: You know, there's a lot of people watching that may have the disease or know someone who has it. What is on the horizon? I mean, what can they expect in the next few years in terms of possible treatments?
BRUIJN: Well, I would say I'm very excited. I'm obviously here in London for a very large ALS meeting, where we discussed this with clinicians, neurologists. Firstly, there are many clinical trials, trying to test ideas and therapies. And they should contact us. They should contact their local, but really find out about those.
The other thing is that in terms of research, there's a lot of activity. Ten years ago, it would be hard to get a small group of people focused on researching this disease. We have tools, we have clues, we know some of the genes. In fact, this year a new gene was identified for us. It's a cause for a few of the ALS cases, but it's so exciting because it's our handle in.
And there's a whole wealth of knowledge we're learning from stem cells, some very exciting findings that we can actually start making motor neurons in a dish from patients' skin. And this is important for drug development, finding treatments and understanding the disease.
GUPTA: You know, it's amazing. And I wish we had more time because I'd love to talk about the stem cell potential therapies in the future. We're going to have you back. This is something we're going to stay on top of. And I hope that we'll have some good news from you in the future. Dr. Bruijn from London, thanks so much for joining us.
BRUIJN: Thank you very much.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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I continue to see a constant focus on genetics in ALS. In reading the transcript, there is genetic susceptibility and treatments. Where are the people looking at cause and how to prevent it? But then no big research organization and advocacy groups are needed if causes are eliminated.
Probably sounds cynical. However, the ALS groups have been approached to try to get them thinking about cause, breaking out subgroups of patients that might be treatable (like ALS/Lyme), with no luck at all. Closed minds are not going to be much help to ALS patients. They just keep having their conferences, fundraising, getting nowhere with cause and treatment.
One ALS research group is screening thousands of viruses looking for cause. Not including bacteria at all. Not including mycoplasma. Not thinking about polymicrobial diseases, or the contribution of chemical toxins, etc, etc.
Isn't it fascinating in a tragic sort of way to see them talking about an environmental factor because of the military cases, and yet just discard it from their approach?
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I actually once contacted the ALS Association to ask if they ever tested for CNS mycoplasma infections in people with ALS. The totally blew me off.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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adamm
Unregistered
posted
The determination by the VA is tantamount to an admission
that it's caused by biological weapons.
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