Suzanne Somors hormone replacement???

desdemona222b

yazmin -

I deleted my previous post because to me, topical hrt applies to products like Premarin cream, which is used to prevent vaginal atrophy.  My onc told me I can continue to use that but to using it VERY sparingly.  I decided I can live without it.

But, it seems that the article's mention of "topical hormones" is referring to wearing a patch, which I didn't notice at first.  I would have thought they would distinguish between the two by calling the patch "transdermal hormones" rather than "topical."

desdemona222b

LJ13 -

Well, if they fund Newsweek, you KNOW they fund the GAO, right? 

charis

The Food and Drug Administration is at it again. It has recently become dependent on the multibillion-dollar drug industry that it's supposed to be policing.

With virtually no public debate, Congress has passed a law that dramatically increases the FDA's dependence on large drug companies for its funding. It's an expansion of a law passed in 1992 intended to speed up the approval process for new AIDS medications.

But this time the emergency was of a different sort. The FDA was running out of money to keep its new employees. Going before Congress and asking for more money amidst a war on terrorism was going to be a tough fight. And the drug companies offered an easier solution.

Negotiate a deal in secret, attach it to the widely popular bioterrorism bill, and the drug companies would pay for the FDA's new employees and more.

The FDA and the drug companies are getting awfully cozy...

The details of discussions leading to this 'solution' were never made public. According to a recent article in the Washington Post, the program was created in private meetings between the industry and the FDA. It was never debated or voted on in either chamber before going to the negotiators. And it's moving forward before a General Accounting Office review of the current program can be finished and made public.

According to the Post, the user fees from pharmaceutical and biotechnology companies would add almost 500 employees to the FDA centers that review proposed new drugs. That would bring the FDA workforce funded by the drug industry to at least 1530. And that would constitute more than 55 percent of the FDA staff involved in reviewing drug applications.

'What was the price of the FDA sellout? $1.2 billion over the next five years.

The report that's due from the GAO is supposed to tell us how well the public has faired under the current smaller program of drug company support for the FDA's drug approval process. But the truth probably won't come out:

[] Over the last 10 years, the FDA has approved nine drugs that proved to have deadly side effects.

[] The Journal of the American Medical Association estimates that 125,000 Americans die each year from the side effects of FDA approved drugs.

[] The FDA approved the sale of Baycol (later found to cause fatal rhabdomyolysis) and continues to approve the use of other 'statin drugs' to lower cholesterol that are also associated with this deadly side effect.

[] Beefed up by drug company funds, the FDA has aggressively suppressed natural alternatives to drugs. Red yeast rice, for example, known to be a safe and effective alternative to cholesterol-lowering drugs, was banned by the FDA
in 2001.

desdemona222b

I heard that they're funding the stimulus package as well.

desdemona222b

charis -

Your hyperlink isn't working for me.  What website is that from, please?  Because whoever wrote it should have spelled "faired" correctly.  It is "fared."

charis

I came here again to see if there was good information but again I see bickering. It took me 2 seconds to find the information that vivre was referring to. Rather than poke fun at her and try to be snide, how bout seeing what she means? I just don't understand the need to attack her. 

Have a nice day ladies and let's get this going so are fighting cancer not each other! 

WASHINGTON - The Food and Drug Administration is moving with unprecedented speed to launch a drug research center to be paid for by companies it regulates.

The goal of the Reagan-Udall Foundation, approved by Congress and signed into law late last month, is to streamline and improve the development of drugs and medical devices, a goal long sought by regulators and the biggest players in the industry, such as Merck & Co., Pfizer Inc., Wyeth, GlaxoSmithKline PLC, and Johnson & Johnson.

At a time when the FDA's reputation has been battered by perceptions that it is lax on some safety issues and too cozy with drug makers, consumer advocates say the loosely defined partnership increases the agency's vulnerability to industry clout despite its promise of groundbreaking success. It's an ambitious undertaking that puts regulators and companies in a relationship unlike that of any other industry.

Given FDA's track record in the past, I'm not confident in their ability to create something that is free of influence from industry," said Francesca Grifo, a director at the Union of Concerned Scientists. Her group and others have argued that the agency has become too accommodating to drug companies the past 25 years, after they began paying FDA user fees for the review of drug applications.

"Time and again we've seen that people within FDA behave as if industry is their primary client," Grifo said.

Sen. Edward M. Kennedy, D-Mass., a co-sponsor of the bill to create the foundation, says the bill requires "effective safeguards to ensure that the foundation is independent of both the FDA and its donors, whether those donors are from industry or are charitable organizations."

Reagan-Udall "will make new research tools and techniques available to the entire research community, shortening the time it takes to develop new drugs and reducing costs for patients," Kennedy added in an e-mailed response.

-----------

charis

The hyperlink in there goes to another article which is no longer available .. I copied and pasted to this so it came out that way. I guess I can go back and disable it....  Yes, looks like a spelling error but that doesn't mean I am going to discount the information.  Just google "fda funded by drug companies and TONS of articles come up .. take your pick.

The point being that drug companies are in bed with the FDA and there can be ethical problems with this.  It's natural human tendancy to befriend those you see every day or those who are footing the bills. It would be hard to remain unbiased when you know that funding can stop if you deny the med.  Policing those who pay your bills? What is the solution? I don't know what the solution is, if I did, I'd run for president!  But this really shouldn't be the argument here, there is enough information out there for huge QUESTIONS about this .. doesn't mean that everything they do is wrong, but they are not above reproach here.

The first article came from:

http://www.newmediaexplorer.org/chris/2004/08/26/the_dirty_little_secret_between_the_fda_and_drug_industry.htm

The second one was

http://www.msnbc.msn.com/id/21298130/

desdemona222b

charis -

Disagreeing with vivre is not attacking her.  And I'm sorry, but since she relies on a CHIROPRACTER to do her cancer screening, I have to seriously doubt her judgement.   I also resent the demands that I "respect" Suzanne Somers, who is the most money-hungry, greedy, salacious woman alive as far as I'm concerned.

desdemona222b

Okay.  Thanks, charis.  I will read them, just like I've read all the other links posted on this thread.

charis

I'm sorry des, I really don't want to debate with you .. but can I ask why you are posting on this thread if you really don't like Suzanne Somers?  Disagreeing is one thing but it seems to me you are being catty towards her -- if you don't like vivre or her decisions you should just leave her be not poke fun at her and her judgement.

desdemona222b

Okay, the information you posted is from a reliable source that isn't peddling "natural" cures for cancer, but this just came about in October, 2007.  That means that the medicines that doctors have been prescribing for years to treat breast cancer aren't affected by that.

I remain unconvinced that the pharmaceutical companies are any greedier than peddlers of untested or informally test "natural" products. 

Also, none of these sites talking about the wonderful effects of compounded bio-identicals even address the risk to women with ER+ breast cancer.

Deirdre1

Also, desdemona222b now that Charis has posted (so you don't have to go hunting for them) items that show a direct link between pharmacutical company's and the FDA (and there are more if you want to do your own search) will you try to understand why women (and men for that matter) are concerned about ANY advise given to them that includes a drug... and that includes cancer treatments...  We are all just trying to do the best we can for ourselves and our family's AND help other if at all possible.

 PS I guess we crossed posted, also to when this happened - this is WHEN journalists found out - do you really think this is the first time the FDA has taken money?   Because other journalists have tried to connect the dots long before 1997.

desdemona222b

Look, I don't dislike vivre, even though she absolutely lambasted me for talking about the benefits of Prozac as though she had just morphed into a Scientologist.  I just think she has bad judgement.  Sorry if I offended you by trying to inject a little humor into the thread.

As far as I can tell, there is no requirement to like Suzanne Somers in order to post here.  What is the point of the discussion if it is entirely one-sided?  I know there are several women here who would love to just see me diasappear, but there are others whose minds are not so firmly made up who are interested in both sides of the picture, just as all of the ladies on this side ought to be.  We are not dealing with osteo-arthritis, gout, or acne here - we're dealing with cancer.  The price to pay for relying on "natural cures" when you have cancer is death, not discomfort.  This is a very serious matter and I do not want anyone who is in the early stage of ER+ cancer to think they can skip their treatments and be just fine if they eat enough flaxseed, take enough "natural" hormones, or whatever.  I personally know someone who put their little girl, who had a brain tumor, on "natural" remedies and went to a very expensive clinic that recommended "natural cures" for cancer and everything else.  Her brain tumor doubled in size during that time - doubled. 

desdemona222b

Listen, Deirdre, I was prescribed Premarin, then the Climara patch, at the ripe old age of 39 after a radical hysterectomy.  (And it wasn't because of cancer - I had chronic PID.)  So, I'm in the same position that barry described a couple of days ago when she remarked about the fact that her doctors recommended HRT and now she is being told she has ER positive cancer, so she doesn't trust the medical establishment much anymore.  I can understand that.  But, I don't understand why there is this complete and total willingness to trust money-grubbing celebrities marketing their own books and products..  Is it desperation and fear?  Well, that's understandable too.  But I'm going to tell you something - I am quite certain that my doctors literally saved my life because I had extremely aggressive comedo necrotic grade 3 DCIS that was ER+.  I have no doubt whatsoever that if I hadn't gone through treatment and stopped the HRT, I would be dead or terminally ill right now. 

I just don't understand why that's a risk that women with early stage bc are willing to take.  If your cancer is more advanced, well that's different.  I think it's perfectly understandable if your cancer was discovered too late for the treatments to cure you. 

I'm very concerned about women with potentially curable, non-invasive cancer who make the decision to use HRT until validstudies have been conducted using the scientific method rather than speculation or observation.

charis

Maybe you should have started a thread that is "the dangers of going natural" ..

you asked what's the point of discussion is its one sided?  Well, I don't have friends that are always disagreeing with me. In fact, I don't have any that argue like you do.  If me and my friends disagree, I have not gotten into an argument or called them a Scientologist or belittle them. I just say, hmmm that's interesting. or:  well, thats a thought. ...  It gets tiresome to always debate when you come to a board to try to like minded individuals and you don't seem to be like minded with her.  Honestly speaking, my brother is quite arguementative and I always let his calls go to voice mail so I don't hear his negativity -- then I call back later when I know he's not home to talk to his wife.  Most people don't like arguing. 

But really, i understand the value of what you are trying to contribute but within this thread it seems to be arguing not the warning bell you wish it were .....  why not make a thread that is warning and sounds a signal if you are serious about it.

Anonymous

Totally untenable argument.

You pay for your car registration, does that mean that MVA (DMV in some states) is going to be biased  toward you?

You pay for stamps, does the Postal Service cater to your needs?

Broadcasters pay FCC user fees ... hunters pay for hunting licenses ... user fees occur across government agencies. 

As long as all drug companies are paying similar fees to subsidize FDA budgets, I don't see a problem here.

desdemona222b

charis -

You completely miss the point.  I have been subjected to a temendous amount of abuse from the very people you are defending, and they have argued as much as I have.  Not everyone who is reading this forum has made up their minds, and I'd like to give these women supporting information representing the other side of the debate.  I would like to add that several women have posted on here that they appreciate my efforts and I have also been pm'd with thanks for what I am trying to accomplish. 

Have you read the entire thread?  Why do you think that it's fine for the participants on this thread to try to stigmatize me because I reported how well Prozac helped with my hot flashes yet it's wrong for me to disagree with them?

AllieM22

Just my two cents on a Friday...I just think everyone may want to keep an open mind about information--nothing is black and white. The FDA and big pharm may be too cozy for everyone's best interests however it doesn't mean that all pharmaceuticals are bad and not helpful to people. I personally am thankful for many of them! Think of it this way--it would be a bad business practice if all your products killed or harmed people, so at least for that reason have to try to make products that work!

And I don't believe drs are "bad" or inflexible either--remember they are responsible if they recommend something to you--so of course most want to see the studies that show how a drug performs before recommending. My oncologist attends the San Antonio (and I'm sure other) conferences that look at the latest studies... constantly looking for new ways to help heal.

The FDA is somewhat in a can't win situation--people want them to review and approve products faster so people in need can use them--but they are blasted if they approve products that turn out to have negative side effects. 

Yes we should explore all avenues including "natural" ones. I have changed my diet to try to help keep cancer from recurring. But I would like to see studies that test products before using them on myself--and that is tough with natural ones. It's a fine line, as someone mentioned, with what is "natural"--doesn't mean it's not a chemical with side effects. And you can't fault a co for not putting up millions of dollars to test whether broccoli helps prevent cancer...

 On that note, I'll just say Happy Valentine's Day! 

desdemona222b

Happy Valentines Day to you, too, Allie. 

Anonymous

Actually Barry's original post asked for opinions pro and con to the hormone issue.

So anyone attempting to squelch opinions on the "con" side is in the wrong here.

Deirdre1

desdemona222b:  If you are trying to protect women that's great I have no problem with that at all, now do exactly as charis has suggested and start your own post and tell us what has gone wrong for you and who you are trying to help.  You are assuming that the women who come here can't figure this out and that's quite insulting..  The FDA may have started out as a potentially good figure in the society but if we don't continually keep organizations like this in check we are all in danger..  If they stayed on the straight and narrow and didn't start being "drug dealers" then there wouldn't be a problem - BUT THEY DID SO THERE IS!  And you might want to ignore that and that's fine but if some of us want to try to figure out what to DO about that in an attempt to keep ourselves healthy and well that's what this thread and area are for...  Other posters do what you say your are trying to do, but they do it with respect and without sarcasm - it's not necessary.. you can be against something without hurting someone..

desdemona222b

Deirdre -

I just don't think you're one to lecture me on showing respect for others - I have found you, Floridalady, vivre, and others here to be very combative and aggressive. 

Having said that,  I think I have also spent WAY too much time and energy worrying about the decisions certain women on this thread have made this week when mostly what I have gotten in exchange is a bunch of hostility.  I've been called a troll, I've been accused of being someone other than myself, I've been accused of being argumentative as others argue with me - boy, some of you indignant women surely are defensive.  Plus, there is such a double standard here on behavior it's just ridiculous. 

Yazmin

Desdemona:

I see.

And, Ladies, I just saw this, from Mayo Clinic, and I am getting more confused, still:

"....Also, bioidentical estrogen and progesterone are available in FDA-approved hormone therapy products, including:

• Estradiol, such as Estrace, Climara patch and Vivelle-Dot patch
• Natural progesterone (Prometrium)"

http://www.mayoclinic.com/health/bioidentical-hormones/AN01133

(OK, so the FDA has approved some bioidenticals; I guess the question, which they are not dealing with in this article is: Is one type safer than the other one; And is it safe or not for breast cancer patients?).

I could be wrong, but to me, the cream forms of HRT (bioidentical and synthetic) SHOULD be safer (than the pills forms), according to my logics, even if one is not convinced that they are 100% safe (which no medicine and no supplement is, anyway, including stuff like Tylenol and even cinnamon supplements). If, indeed, these are relatively safe, perhaps the benefit of using them would outweigh the risks, assuming said risks are small?).

Anybody knows what the difference is between cream HRT and pills?

AllieM22

I'm not sure that absorbing through the skin makes it less potent or safer...but I have not researched. It still goes into the body...yes?

Yazmin

Also: concerning the ongoing "arguments," I personally feel that there is an easy way to do away with them.

Example: I personally decided to turn down Tamoxifen. My decision, based on the fact that I don't like the statistics on Tamoxifen. It bears repeating: Tamoxifen is a life-saving medicine. And it is saving the life of one of my support-group members right now (shrunk her uterine cancer tumors to where she is living a normal life for the next few years). But my take on this medicine is that it performs this temporary miracle on only a small minority of the patients. I resent the way that the system slaps almost everybody with Tamoxifen. Of course, if it was reserved for only a small portion of the patient population, it would not be making this many billions for AstraZeneca.

Anyway:  when I posted what I honestly thought was valuable information on the Tamoxifen statistics, I faced an absolute ONSLAUGHT. I was literally ASSAILED.  [How DARE you criticize Tamoxifen? What a shame....etc.... etc...).

One FURIOUS participant also wrote me back saying that my information proves that Tamoxifen works most of the time (now remember: my information was meant to prove, TO THE CONTRARY, that Tamoxifen only works for a minority of the patients).

To me, this means that most of us see whatever we are comfortable seeing, even those trying to keep an open mind. In that situation, I decided that I could do without the anger that I had caused by "criticizing" Tamoxifen, and I promptly withdrew myself from that place.

This was a while ago, and mentalities change quickly. Nowadays, this and other forums offer an Alternatives section; and  I am able to put in my two cents about Tamoxifen in different forums without getting lynched . And that makes me feel good (especially when I win over some, and convince them to look into their own personal statistics and make their own decision, instead of leaving it all with The Doctor, ostrich-syle). In some cases, people have decided that Tamoxifen is still for them; and in some other cases, people have decided, after consultation with their onc, that Tamoxifen is actually not for them. The beauty of the thing is that, when presented with this study, showing that Tamoxifen actually FUELS HER+ tumors, several oncologists have actually gone right along with it: http://www.nature.com/nature/journal/vaop/ncurrent/full/nature07483.html.

One oncologist was inmensely embarrassed, when presented with this document. Red in the face, unable to explain why she had this HER+ patient on this medicine, other than because "that's what the literature says." 

We live in a society where many doctors feel compelled to "do something." And unfortunately, there is not such a big choice of drugs out there (for breast cancer, anyway), so: some doctors just prescribe.............something.

OK, I have digressed, and I apologize. All this was just to say the following:

•  
  • I personally think it is only fair that one should make one or two attempts to get one's point across. But if the majority of the people involved simply don't feel that way, perhaps the best strategy might be to leave it at that?

We all have our opinions (which is a sum of our personalities and personal experiences), and those opinions are unlikely to change 180 degrees in a hurry (or at all). Meanwhile, angry exchanges don't help anybody struggling to make a difficult decision.

OK, I am off my little soap box, and I would like to to take this opportunity to thank everybody for the information they have contributed and will, hopefully, continue to contribute in peace and in a respectful fashion.

Deirdre1

Hi Ladies,  I was told by my bs that it is less potent through the skin but that the jury is still out on whether it is safer.. and when I asked the question of all my doc's "since I have had a bi-lateral mx can I go back on my skin applied, cream progesterone"  I was alway told that I should go off of it (of course I had already stopped it before the surgerys) (that was my gp, bs, gyn even ps)..  There are European countries who place women with bc on bio-identicals (synthetic or not) and seem to have positive outcomes though.

Anonymous

Re Tamoxifen and Astra Zeneca, sorry, it no longer sells the product.

http://www.nolvadex.com/

It is available generically. Making millions for the generic manufacturers. Proving yet again that a patent is not required in order for a company to make money.

konakat

It's a tricky thing making blanket statements -- different types of breast cancer need to be treated differently.  My Mom had post-meno BC and was treated with Tamox during trials.  She considered cured and is a feisty 84 yr old!  For this, I am grateful to Tamox.

I was premeno and lobular.  We found that tamox wasn't working and actually working against me (apparently lobular doesn't respond well to tamox, and I'm mildly her+).  So out came the ovaries and a new treatment protocol.  Mom's and my BC are totally different and apparently I didn't inherit it from her, hence totally different treatments.

So, citing one or another article should be read closely, i.e., who were the patients and what was the BC...  What is a great treatment for one can cause considerable harm for another.  Citing selective articles to "prove" a point is, well, pointless.  A collection of articles with different viewpoints from reputable sources is the best. 

Re estrogen creams - I'm often told that they can be safe, even if you're ER+.  But having very estrogen hungry tumors you couldn't get me in the same room with one!  If you're ER- wouldn't HRTs and estrogen be safe?  I don't know.  But if you don't know you may have an ER+ tumor or cancer in the future, how do you decide?  I guess it is a personal decision based on the best info we have -- a balancing of benefits and risks -- a difficult thing to do.

Re Suzanne Somers -- sure if something works for her and she wants to tell people about it fine - just like the point of these boards is to share our experiences and it is our choice to read them and comment if we want.  I enjoy the healthy debate, and yes, I have some eye rolling moments too.  But marketing her treatments as a must-do or the latest and greatest is the action of yet another irresponsible celebrity. One shoe or protocol does not fit all.  Just like the media latching onto a new treatment, most recently ABC and the targeted liver chemo, does a disservice by focusing on one treatment with scant backround info in a 3 minute clip.  It's nice to know about but it's only one of many great trials going on.

Yes, pharmas are businesses.  I assume most natural treatment centers are too (i.e. not giving it away for free).  As such, both are "drug dealers".  I don't doubt that pharmas are looking at alternative treatments -- if they can market something, regardless of the source, and make a buck they will.  And why not -- making a buck fuels research.  That they make such large profits and not pass lower prices on to patients is what's wrong. And, really, they aren't all unnatural chemicals.  For example, Tamox is developed from yew (?) tree bark.  Some alternative treatments are chemically harvested natural resources -- often you aren't swallowing capsules of straight tree bark (or whatever) but a chemical derivative of it marketed as "natural".  I don't know if it's still the source, but equine urine is the source of some hormonal pharma drugs -- and pee is as natural as it comes!

Caveat emptor (gee, my classics degree has come in useful!!)  I didn't mean to blather on endlessly, but I find this thread very thought provoking.

anondenet

http://www.cardiologyonline.com/journal_articles/In_contract_to_oral.htm

In Contrast to Oral Estrogen Therapy, Transdermal Estrogen Therapy Does Not Increase the Risk of Venous Thromboembolism in Postmenopausal Women Who Carry a Prothrombotic Mutation

December 2, 2005 By Sahar Bedrood B.S. and Asher Kimchi M.D. Villejuif, France - There are many factors that can increase the risk of venous thromboembolism (VTE). Oral estrogen therapy is one known factor that can increase the risk of VTE in postmenopausal women. Celine Straczek PhD, et al from the Cardiovascular Epidemiology Unit at INSERM in France investigated the impact of the route of estrogen administration on the association between a prothrombotic mutation and VTE risk. Their findings, published in the November 29, 2005 issue of Circulation, indicate that in contrast to oral estrogen, transdermal estrogen does not confer additional risk on women who carry a prothrombotic mutation. The study was a multi-center case-control study of VTE among postmenopausal women who enrolled in 7 clinical centers in France. It consisted of 235 patients who had a documented episode of idiopathic VTE and 554 patients were controls who admitted to the hospital with an a priori diagnosis unrelated to VTE or hormone therapy. All patients were genotyped for Factor V Leiden and G20210A mutation, another prothrombotic mutation. The prevalence of the prothrombotic mutation among controls was 4.9% for the factor V leiden and 2.5% for the prothrombin G20210A mutation, as expected in the white population. Factor V Leiden was associated with a 3.4-fold increased risk of VTE (95% CI, 2.0-5.8) and a prothrombin mutation was associated with a 4.8 fold increased risk of VTE (95% CI, 2.5 to 9.4). Oral but not transdermal estrogen was associated with an increased risk of VTE (OR 4.3; 95% CI, 2.6 to 7.2). After adjustment for confounding factors, the combination of either factor V leiden or prothrombin G20219A mutation and oral estrogen gave a 25-fold increased risk of VTE compared with nonusers with the mutation ( 95% CI, 6.9 to 9.5). The risk for a women with prothrombotic mutation using transdermal estrogen was similar to that of women with a mutation who were not using estrogen (OR, 4.4; 95% CI, 2.0-9.9; and OR 4.1; 95%CI, 2.3 to 7.4, respectively.) Overall, the thrombotic risk associated with oral estrogen use is substantially increased among women carrying a prothrombotic mutation. Transdermal estrogen administration seems safer than oral estrogen therapy with respect to thrombotic risk. Co-authors: Céline Straczek, PhD; Emmanuel Oger, MD, PhD; Marianne Beau Yon de Jonage-Canonico, PhD;Geneviève Plu-Bureau, MD, PhD; Jacqueline Conard, PhD; Guy Meyer, MD; Martine Alhenc-Gelas, PhD; Hervé Lévesque, MD; Nathalie Trillot, MD; Marie-Thérèse Barrellier, MD; Denis Wahl, MD, PhD; Joseph Emmerich, MD, PhD; Pierre-Yves Scarabin, MD, MSc; for the Estrogen and Thromboembolism Risk (ESTHER) Study Group

desdemona222b

There is a woman right here on these forums (but not on this thread) who was diagnosed with the same grade of carcinoma as me, only she was Stage I, the earliest stage of invasive cancer.  Within 9 months, it had metasticized and she is now Stage IV - it is all over her - in her bones, her liver, her lungs.  Comedo necrotic grade 3 cancer is not something to sit back with a "wait and see" attitude, ladies.  If any of you have this type of cancer and it's still DCIS, I beg you to listen to your medical professionals instead of Suzanne Somers.  I beg you not to believe claims that green juice, "natural" HRT, sodium bicarb, or anything else that has not been tested will cure your cancer.  The Tamoxifen is not a must, as it only increases your odds by about 6%.  I don't take it myself due to liver complications.  But surgery, at the very least, should never be considered optional unless you want to lose your battle with this horrendous disease.