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katebuggie28

Washington Post Article

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Please read "Our Daily Meds" if possible. I under no circumstances would take a drug for something that I can control with diet. And please consider this: what phrama company wouldn't want the market of 1 in every 130 Americans. What with the lax laws about marketing drugs in America (putting kids books about OCD drugs in our national and school libraries, sponsoring and creating "science" exhibits which tour our science centers nationwide, making fuzzy mascots and giving away toys to kids, etc.), we can see that big phrama companies may well stop at nothing, including killing and harming thousands of people, to sell their big blockbuster new drug.

Okay, the book torqued me off. But for good reason. Really good read - not dry - only risk is that you might become hideously jaded (or more hideously jaded if you were already, like me) and drive your friends crazy.

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Please read "Our Daily Meds" if possible. I under no circumstances would take a drug for something that I can control with diet.

Everything about the pharma industry acknowledged but just challenging this idea .. (from personal experience)

I'd likely say the same yet I know for instance I didn't get hay fever when I lived in North Africa... back in Europe its "daily meds" least over summer but It is in my power to say move back, apply for Libyan citizenship ... etc.

OK, perhaps extreme but I would guess New Mexico or Nevada might leave me without hay fever too?

My first response is like you ... but thinking about it, why don't I move to Nevada ?


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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This article doesn't say anything more than we already know: Zonulin, a drug which is to be marketed to celiacs, is being developed by a Dr. who is very near and dear to the celiac cause.

This is being done by a private (this is very important as it shows that the investors are using their own money to finance this) pharmaceutical company, Alba Theraputics and this Dr. is running it. He is also the Dr. connected to the Celiac Center at the University of Maryland Hospital. I am not suspicious of his motives.

However, granted, it's your perogative not to take this prescription once it's out on the market - and it's so successful that they are already in Phase IIb of the Clinical Trials. http://www.albatherapeutics.com

I have a relative who works for a major, publicly traded, international pharmaceutical company and was privy to an intra-company film about the successes of their products. The patients who took the drugs were interviewed (non paid interviews) and I actually cried at their stories of being cured and this pharmaceutical company actually cares about the patient. This pharamceutical company feels it's all about the patient's health and success as curing them - the profit is secondary. I am not at liberty to tell you anything more than this but I have a lot of respect for this particular pharma company.

Frankly if it wasn't for pharmaceuticals I wouldn't be alive to see my 50's. Don't throw away the "baby with the bath water."


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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The brainwashing of the American consumer public continues. You don't really have a disease until a pharmaceutical company invents a way to profit off of it.

The least problem in the world we have is a lack of drugs for this.

It does nothing to address the issues of education, diagnosis, respecting the disease, accurately sourcing what is in our food that we eat, enforcing accurate labeling, the lack of health insurance coverage for the working class in this country, nothing.

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Thanks for sharing this perspective, Deb. I had the pleasure of hearing some of the former leadership of Alba speak a few years ago and I was so inspired by their research and dedication to learning more about Celiac.

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I wonder, and would appreciate input on this from anyone here, about the possible effects of this drug on the people who make the choice NOT to take it and instead control the disease with diet. IF this drug hits the market as "cure" for celiac, what happens to the labeling laws and so forth for the food available to celiacs? We've come a long way in the last several years and though I'm new to this, I have no doubt that I have it much easier than someone with celiac or gluten intolerance did even 10 or 15 years ago. Will we backslide in the progress we've made with the food industry?


Blessings,

Amy, mama to 3 awesome boys!

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While I think that there is too much use of pharmaceuticals in this country, if not the world, I think that there's an equally strong backlash against it by some segments of the population, for the sake of the backlash, and not borne out of logic. We didn't invent infections after antibiotics came along. We didn't invent bi-polar after lithium came along. We didn't invent diabetes after insulin came along. We didn't invent asthma after beta-agonists like albuterol came along. We didn't invent heart disease after nitroglycerine, beta blockers and so forth came along. We didn't invent migraines before imitrex and maxalt came along.

But once we get away from the clear cases, healthy people like to say "restless leg syndrome" doesn't exist, they just want to sell someone a drug. Or "fibromyalgia" doesn't exist, they just want to market more pills. Or "ADD" doesn't exist, they just want to drug the kids. Or, even, "female sexual dysfunction" is made up, they just want your money.

Bull-. I believe the phrase goes something like "Until you've walked in someone else's shoes..." While we may *OVER*medicate, that does not logically conclude to the statement that we (as a society) don't need the medication at all. We may, as a society, be doing a whole host of things that is contributing to our problems. Causing us more problems, and making those problems worse than they would otherwise be. That doesn't mean the problems wouldn't ever exist, or that we can operate in a vacuum that takes our society, our world out of it. Yes, we need better education, emphasis on diet, emphasis on physical activity, emphasis on stress management, emphasis on social support systems, emphasis on healthy time management techniques. But none of these things suddenly make organic disease suddenly vanish entirely.

We can make intelligent choices. We can make more conservative choices first. We can keep ourselves well informed. And we can stay aware of our bodies, ourselves, and the wholistic effect of our lives on our health (and vice versa). But that doesn't mean that disease doesn't exist and pharmaceuticals are there solely for profit.

(Please forgive the soapbox rant. I'm tired of people trying to tell me that the crazy insane feelings in my legs within two hours of bedtime that drive me to want to smack them with a stick since they keep me from sleeping, but are totally controlled by a very low dose of Mirapex and not by dietary/exercise/supplemental means, is a made up condition that no one has. Or the extreme exhaustion and full body pain and heightened sensory input that can be an overload in the brain that's very difficult to put aside without a big withdraw from those inputs, but is much better managed with pharmaceuticals than dietary/psychological/physical/supplemental means alone, is a figment of my imagination. I could go on... I won't.)


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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As to the hayfever...I read someplace that it takes about five years to redevelop hayfever for a new location. I don't know if that's true, but I did read it someplace (and was excited, because I'm moving to the desert).

I only have alder tree pollen hayfever, so it gets over pretty quickly in the spring.

...I had a rant here, but rants rarely change people's minds anyway. I reiterate that the book is very valuable and well written and shocking in many ways.

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I have a relative who works for a major, publicly traded, international pharmaceutical company and was privy to an intra-company film about the successes of their products. The patients who took the drugs were interviewed (non paid interviews) and I actually cried at their stories of being cured and this pharmaceutical company actually cares about the patient. This pharamceutical company feels it's all about the patient's health and success as curing them - the profit is secondary. I am not at liberty to tell you anything more than this but I have a lot of respect for this particular pharma company.

The use of the "cure" in your post seems to suggest that after using the drug, a Celiac can become non-Celiac, stop taking the drug, and go on with their lives (including the consumption of gluten) as if they never had Celiac. Is that really what is being promised? I mean, in my view, having to continually take a drug is "disease management", not a cure. A true cure for Celiac would be one where the auto-immune reaction no longer occurs at all, without the continual use of any drug.

When it comes to managing Celiac, I much prefer a dietary means. Drugs always seem to have side effects, whether immediately recognized or not. And in the case of a Celiac drug, unrecognized problems due to gluten ingestion or the drug itself is what I currently expect.

In the context of something like obesity due to poor diet/lifestyle, I don't see any cure other than changing one's habits. Drugs always seem to simply give the appearance that there isn't a problem, and only as long as the drug is being used. So if a super weight loss drug came out and allowed anyone to eat junk food and not get fat, is that a cure or is it sidestepping the problem? We all know that there'd be problems down the line due to the poor diet, as weight gain isn't the only effect of eating junk food.

I'd love there to be some way to retrain the immune system to act appropriately on it's own. Seems to me that'd take a genetic alteration, if I understand the research on Celiac correctly.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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I wonder, and would appreciate input on this from anyone here, about the possible effects of this drug on the people who make the choice NOT to take it and instead control the disease with diet. IF this drug hits the market as "cure" for celiac, what happens to the labeling laws and so forth for the food available to celiacs? We've come a long way in the last several years and though I'm new to this, I have no doubt that I have it much easier than someone with celiac or gluten intolerance did even 10 or 15 years ago. Will we backslide in the progress we've made with the food industry?

You make a very valid point.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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The use of the "cure" in your post seems to suggest that after using the drug, a Celiac can become non-Celiac, stop taking the drug, and go on with their lives (including the consumption of gluten) as if they never had Celiac. Is that really what is being promised? I mean, in my view, having to continually take a drug is "disease management", not a cure. A true cure for Celiac would be one where the auto-immune reaction no longer occurs at all, without the continual use of any drug.

When it comes to managing Celiac, I much prefer a dietary means. Drugs always seem to have side effects, whether immediately recognized or not. And in the case of a Celiac drug, unrecognized problems due to gluten ingestion or the drug itself is what I currently expect.

In the context of something like obesity due to poor diet/lifestyle, I don't see any cure other than changing one's habits. Drugs always seem to simply give the appearance that there isn't a problem, and only as long as the drug is being used. So if a super weight loss drug came out and allowed anyone to eat junk food and not get fat, is that a cure or is it sidestepping the problem? We all know that there'd be problems down the line due to the poor diet, as weight gain isn't the only effect of eating junk food.

I'd love there to be some way to retrain the immune system to act appropriately on it's own. Seems to me that'd take a genetic alteration, if I understand the research on Celiac correctly.

Sorry for the confusion, my "cure" in my post didn't refer to celiac.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I for one am very happy to see the progress that Alba Theraputics has made. It will allow for a choice. I have two children and although I wouldn't wish celiac disease on anyone, my child who is best "able" to handle it is the one that is diagnosed with it. Knowing that at anytime, my son could develop celiac disease, too, is worrisome to me. While I am in control of his diet, he will/would comply. But I see something in him that makes me think he would not be good on his own . . . at least for his teenage and young adult years. I look at this drug's development as a chance for all those who find it too hard to comply with the diet to improve/maintain their health. But my concern is this . . . that the diet is no longer even offered/mentioned as an option . . . say 30 years down the road . . . then the new generation of celiacs won't even know they have the choice.


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

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Personally I would like to manage the condition with diet. It seems like the most natural and healthy approach. But we don't always have total control over diet, especially when travelling. CC is a major concern in a restaurant or someone else's home. The idea that a medication could protect me from getting sick in such situations would be gloriously liberating.

JMHO


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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I just thought I'd add my two cents. :) It doesn't seem that the drug is supposed to replace the gluten free lifestyle, instead it is a supplement to help prevent the celiac autoimmune reaction that may take place upon accidental gluten exposure. The more often this autoimmune reaction takes place, the higher the likelihood of developing celiac associated diseases. I would give my son this medication if it would help protect him from cross contamination. It only takes one molecule to start a reaction. Molecules are tiny things, I can just imagine how many gluten molecules a typical person with celiac disease is unknowingly exposed to.

I liked how the article concluded by stating that the diagnostic criteria for celiac disease is too strict. I like to think the medical community to start to come around soon.


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

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I just thought I'd add my two cents. :) It doesn't seem that the drug is supposed to replace the gluten free lifestyle, instead it is a supplement to help prevent the celiac autoimmune reaction that may take place upon accidental gluten exposure.

...

...

I liked how the article concluded by stating that the diagnostic criteria for celiac disease is too strict. I like to think the medical community to start to come around soon.

Yeah, I agree, and the bit about the diagnosis criteria is encouraging, though I will be surprised if anything changes on that front anytime soon.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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I liked how the article concluded by stating that the diagnostic criteria for celiac disease is too strict. I like to think the medical community to start to come around soon.

I did, too--and I totally agree with this line of thinking.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I'll throw my five cents in (inflation and all, you know).

First, to Deb: Please don't confuse a private company with a charity. "Private" just means they haven't reached the point of IPO yet, if ever. The investors in Alba want their money back, with interest and big dividends for years to come, and they want that to start soon. The good Dr. may have founded the company, but these days he's back to research at U of Md. His contribution to Alba (besides the initial ideas) is to sit on the clinical and scientific advisory boards, and writing and speaking for the company about the research. The management of the company consists of pros in the business of pharmaceuticals. The chairman of the board used to be a VP at Eli-Lilly. Their main corporate partner is a publicly traded, global biopharmaceutical company.

That said, none of that is inherently bad. That's the way most good things come to be in our capitalist world. I echo your faith in the good Dr.; he's done quite a lot for the celiac community, and should continue to do so. I see no reason to question his motives either.

If this research proves useful and safe enough to reach the market, it will not be a cure. No autoimmune disease is currently curable, only treatable (to varying degrees). Nor will it be an alternative to the gluten-free diet and lifestyle. I've seen no statements from anyone associated with the company claiming this will be a cure, or that it will allow celiacs to ditch the diet. The diet is for life. Also, there are people who are allergic to wheat for whom this is presumably not a treatment, so I don't see the labelling laws changing for that.

I am a celiac who is thriving on the gluten-free diet and who does not find the lifestyle to be a great burden. It is inconvenient at times, but in general no big deal for me. I also feel that I am not as sensitive to gluten as some others, as I know I've been in contact with it from time to time without a noticeable reaction. (Confession: I've picked the croutons off a salad and eaten it when I was hungry and not in the mood to be pushy.) I also despise taking medication, even aspirin or cold meds, even the multivitamin I should take every day but don't. So, if this drug comes out, it is quite likely that I, personally, won't take it, especially if it's a "daily med". That will be my choice to make.

But everytime I visit this forum I read about people and/or their loved ones who are not thriving, who can't adequately deal with the lifestyle or the diet, 7/24/365. People who live with others who are careless with gluten. People who have to travel frequently. People who order food at a "safe" restaurant and spend the next few days sick. People for whom 20ppm seems no better than scarfing down a box of Krispy Kremes. If - and it's still a big if - this becomes something that can ameliorate even 10% of the misery some of these people go through, isn't it worth it? Even if a few people get stinking rich as a result?

/dismount soapbox


DX'ed celiac June 2006 by blood and biopsy

Gluten-free and healthy since

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As to the hayfever...I read someplace that it takes about five years to redevelop hayfever for a new location. I don't know if that's true, but I did read it someplace (and was excited, because I'm moving to the desert).

that certainly hasnt been my experience. At one pt in college I was moving back and forth between houston and central pennsylvania. Every time I moved, I woudl have terrible allergies for about a month. Then a month later, I'd move again . . it was awful. It took a month for my body to STOP reacting to the new pollen.

Of course, i am exceptionally reactive for allergies - see siggy


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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I'll throw my five cents in (inflation and all, you know).

First, to Deb: Please don't confuse a private company with a charity. "Private" just means they haven't reached the point of IPO yet, if ever. The investors in Alba want their money back, with interest and big dividends for years to come, and they want that to start soon. The good Dr. may have founded the company, but these days he's back to research at U of Md. His contribution to Alba (besides the initial ideas) is to sit on the clinical and scientific advisory boards, and writing and speaking for the company about the research. The management of the company consists of pros in the business of pharmaceuticals. The chairman of the board used to be a VP at Eli-Lilly. Their main corporate partner is a publicly traded, global biopharmaceutical company.

Bill - Rest easy, I'm in corporate world and I understand diff. bet. private and non-profits. I only wish they'd open IPO - I'd invest :P I think this will be a good product as what they work on is not only for celiacs.

That said, none of that is inherently bad. That's the way most good things come to be in our capitalist world. I echo your faith in the good Dr.; he's done quite a lot for the celiac community, and should continue to do so. I see no reason to question his motives either.

If this research proves useful and safe enough to reach the market, it will not be a cure. No autoimmune disease is currently curable, only treatable (to varying degrees). Nor will it be an alternative to the gluten-free diet and lifestyle. I've seen no statements from anyone associated with the company claiming this will be a cure, or that it will allow celiacs to ditch the diet. The diet is for life. Also, there are people who are allergic to wheat for whom this is presumably not a treatment, so I don't see the labelling laws changing for that.

I see food manufacturers using fact that there is now a "drug" perhaps then as an "excuse" to challenge the labeling laws as regards status of gluten free. In this way, the only allergen they'd have to post would be wheat and this drug's affect would further the manufacturer's claims that now they don't have to show barley, rye and oat - if it came to that. Right now they don't have to show barley, rye or oat - but what if this drug was never thought of, and GIG or other assn got legistation that manufacturers had to show all the "gluten" triggers of wheat, oat, barley, rye? This drug could get in the way of that legistation and a ruckus would evolve that "hey, there's a cross-contamination drug for that? Why do we manufacturers HAVE to revise our labels again?"

I am a celiac who is thriving on the gluten-free diet and who does not find the lifestyle to be a great burden. It is inconvenient at times, but in general no big deal for me. I also feel that I am not as sensitive to gluten as some others, as I know I've been in contact with it from time to time without a noticeable reaction. (Confession: I've picked the croutons off a salad and eaten it when I was hungry and not in the mood to be pushy.) I also despise taking medication, even aspirin or cold meds, even the multivitamin I should take every day but don't. So, if this drug comes out, it is quite likely that I, personally, won't take it, especially if it's a "daily med". That will be my choice to make.

But everytime I visit this forum I read about people and/or their loved ones who are not thriving, who can't adequately deal with the lifestyle or the diet, 7/24/365. People who live with others who are careless with gluten. People who have to travel frequently. People who order food at a "safe" restaurant and spend the next few days sick. People for whom 20ppm seems no better than scarfing down a box of Krispy Kremes. If - and it's still a big if - this becomes something that can ameliorate even 10% of the misery some of these people go through, isn't it worth it? Even if a few people get stinking rich as a result?

/dismount soapbox

My husband is one of the ones who are not thriving and cannot be careless about his gluten intake.

This new drug will not cure that's true, but it might provide a better life for those like my husband

who have become hermits. Even if it has a "placebo" effect, it could make my husband less

nervous about eating out, visiting relatives (gluten free of course). Right now he's unable to

handle this mentally, even though he's been gluten-free for about 4 years now. He hasn't been right in

head since the diagnosis. He's afraid of every food that wasn't made by his own hands and

he's convinced that even transporting his own food is too much of a PIA and is

embarrassing to him - even if around family. He also has other food allergies - the

whole situation is too much for him. Is this an unusual situation? I really don't know.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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