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Medical mysteries part three

Posted: Thursday, May 15, 2008 12:47 PM by Barbara Raab

By Robert Bazell, NBC News Chief science correspondent

With the third part of our series, “Medical Mysteries,” about auto- immune diseases, we turn to what many see as the biggest mystery of all: why do these disease strike women in far greater proportions than men?

As many have you have commented in response to earlier reports and blog postings, all these diseases do indeed affect men as well and we certainly do not mean to ignore that fact.  But still, it is overwhelmingly a problem for women. The numbers vary for different diseases, but they can range from three to 10 times as common in women as compared to men.

So what is the answer? The fact is that scientists do not know--even though they have been searching for years. Clearly, a woman has to have a difference in her immune system so she can tolerate a fetus in her body. Clearly, hormones are involved, because often auto-immune diseases get getter or worse before, during, and after pregnancy and menopause.  Many scientists think that if they could understand why women suffer disproportionately, they would find better treatments.

 

Tonight’s report focuses on multiple sclerosis, the auto-immune condition that leads to destruction of the covering of nerve cells, including those in the brain. It can be horribly crippling in many ways

 

The woman we feature, Cathy Dennes Akay, is involved with a fantastic MS charity called Cure MS Now.  Other excellent sources of information are the National MS Society and the National Institutes of Health website on the subject.

 

In tonight’s reports, we do not deal with the exciting research toward finding better treatments and many other important aspects of MS. Each of the reports in this series is only about two minutes long.  We try to highlight important issues in a compelling way.  With the limited time we can only mention so many things, but we hope the links to websites like those above can be helpful for those seeking more information

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Comments

I understand that this message has nothing to do with Robert's post.  ( I have enjoyed the reports he has made this week)  But there is something that is puzzling me.  I get my news from a few different sources just to make sure I know what is going on.  With the California Supreme Court decision I can't help but wonder who is right.  NBC is saying one thing and CNN is saying another.  I am not sure who is right. Please make sure that you at NBC get it right.  I am more of an NBC fan then CNN so I am hoping you are.  But it does raise the question of who is putting the notion of being first over accuracy? Let it not be the proud Peacock Network.
I love the name of this series. I wish it were a permanent fixture on the nightly news! The National Organization of Rare Diseases (NORD)has a laundry list of conditions people should know about so as to protect themselves from wasting precious money and time trying to diagnose.  Lest you think that "rare" means it would not be of interest, those rare diseases, of which Multiple Scelerosis (MS) is included, affect at least 12 million Americans, and countless unknown individuals who have yet to learn of theirs.
To the viewers who have had their interest sparked, the National Institutes of Health has a great web site, with links to information on research, and descriptions of some of the autoimmune diseases discussed in this series. In my opinion the NIH is an amazing organization, and I am so glad they exist and are doing such important work. My mom had an auto immune disease called Wegeners granulomatosis and was treated as a research patient at the NIH for seven years. She got great care, she got access to drugs that were on trial, and she undoubtedly had a longer life as a result of the "research participant". Thank goodness for our tax dollars at work at the NIH. Thank you Robert Bazell for this reporting. It took my mom nearly 10 years to find a doctor who made the correct diagnosis. She had been accused of drug abuse, she was told she'd contracted a parasite during her travels to Peru, she was told she was allergic to nearly every food... all while doctors tried to pin her health problems on either her mind, or some other far flung idea. The relief a person feels when they FINALLY learn what their issue is is huge. The diagnosis gives the patient a concrete foe to fight against. Thank you for shedding some light on these difficult medical mysteries.
As much as I appreciate any coverage Multiple Sclerosis is given, it should be made known that Kids Get MS Too. My daughter was diagnosed with MS at the age of 10, leaving her with a very long life dealing with so many side effects from this disease, icluding many cognitive issues along with the obvious physical disabilities.
I am a male with an autoimmune disease. I do not like the portrayal that autoimmune diseases are women’s diseases.  It is hard enough to make people understand the painful side effects of a disease they cannot see.  I have had several people ask if my autoimmune disease is AIDS.  I can hear their comments now after your report. I appreciate that you are reporting on our type of disease, just not fact that autoimmune diseases are primarily women’s diseases due to child birth.
I have often wondered: who did the studies and labled M.S. a rare disease? How many people do have this chronic disease we call M.S.? How many people have to have this disease before it isnt labled "rare" anymore?
Thank you for focusesing on Multiple Sclerosis tonight.  I live with Multiple Sclerosis every day.  I was diagnose in 2006.  What type of medication are there.  What about Stem Cell.
First, I wanted to thank you for talking about MS as well as addressing the impact it has on people’s lives.  Although it is great that auto-immune diseases are being discussed, it is a shame that the focus frequently has been on a specific gender (women).  Although this disease does affect women more often then men, I believe this is a missed opportunity to shed light on how MS impacts EVERYONE living with it.  Furthermore, men tend to shy away from medical examinations and yearly health-checks, so when we only highlight the effect of MS on women, we perpetuate the idea that men’s health is less important than women’s health.  Thanks for talking about MS, but I think it would be more helpful in the future for the focus to be more gender-neutral, that way we highlight the real importance: a cure for everyone with MS.
What about ALS? It's just as prevelant as MS. And an even bigger mystery? It is disappointing that NBC never reports on this disease. Especially in light of the Advocacy awareness event that just happened this past weekend. It's been too many years since Lou Gehrig died. Please help raise awareness.
I am one of the over 400,000 women with MS (and one of the over 500,000 people with MS) and am an MS Activist.  After watching the short report tonight about MS, I am very disappointed in the approach you chose to report.  There was no information about MS except that it affects more women than men and that Ms. Cathy Dennes Akay is involved with a charity that most people with MS have never heard of.  Last week, over 400 people with MS spent the week in Washington DC at a Public Policy Conference talking with all of our Legislators seeking funding and backing for medical research and the elimination of the 24-month waiting period for Medicare.  These are the types of stories you should be covering.  The over 500,000+ people in this country who have MS need more funding for medical research, not to know that this debilitating disease affects more women than men.  Thank you for airing the story, but more coverage for what is being done in Washington DC to try to get more medical research funding would accomplish more.  
I apreciate the effort. But plenty of men have MS, too. I'm one of them. And I'm afraid that you may have only added to the confusion surrounding this disease.
"why do these disease strike women in far greater proportions than men?"

I believe the answer to the puzzle is complicated, with many parts and possible combinations.

I think one part of the puzzle is the Western life style, with all its drugs (legal and otherwise, make up, etc. I don't believe auto immune diseases are as rampant in third world countries as they are in the Western World. Lets face it, pollution a bad thing, it does not matter if your talking about the planet or the human body.
Outstanding series on "Medical Mysteries" this week.  Much better than "the Mind Body Connection" from a while back. Keep it up.
Thank you for sharing about MS.  It was great that you did highlight it in your segment for medical mysteries.  The only complaint was the focus of more women than men getting auto immune diseases.  In my own experience, this is not always the case.  The biggest problem those with MS have is that most people do not understand the invisible symptoms we go through.  We feel a lot of stuff that others cannot see.  The biggest complaint most have is an overwhelming fatigue that is different than normal tiredness.  I know that there was a limited time for the segment, but so much more could have been the focus.  I do appreciate those digging into the research for this.
I agree with the commenter from Eagle, Idaho about the lack of information in your report. And I was SHOCKED at the "medical expert" you included who actually said, with a straight face, "Maybe this is just the price women pay for having reproductive organs." Really? Seriously? If it's the "price I pay," then why do men have MS too (I know it's in lesser numbers)? Are there no infertile women who have MS (I realize they still have repro. organs, but their hormonal makeups are different)? I was diagnosed years before becoming pregnant and have not had any symptoms throughout 2 pregnancies, post partum and breastfeeding periods. So how would that be explained? Yes, I thought the segment was a little light on info, but I thought this comment was downright irresponsible and outrageous!
There are more medical mysteries out there that really are mysteries. For example, no body yet understands why someone; especially women have Fibromyalgia and Chronic Fatigue Syndrome.  As someone who lives daily with these diseases, it gets frustrating being told "it's all in your head".  I live daily with debilitating fatigue and pain that comes out of the blue. I wish that these diseases got as much respect and press covereage as the diseases you chose to report on this week. It would be nice to have more funding from NIH for these as well as for Physicians to take these diseases seriously.
I am one of the many thousands of men in this country with MS. For years now, the statistics have been that 3 or 4 times as many women have MS as men, but I think this is only one fairly small piece of data about the disease. Ethnic origin probably has much more to do with who gets MS as does gender. Was this point made in the show ?
It was great to see you share the information of MS.  I have had MS since 2002, and I get totally upset of everyone ALWAYS saying "But you look so good".  Only if they knew I take pills to fight fatigue, I am always tired, my right arm and leg feel like they are always a sleep, etc, etc., and my problems are small compared to many.
Time Needs to be spent on how individuals with MS have to fight with insurance companies to pay for their perscriptions.  Insurance companies are now only covering half the cost for some of the prescriptions. And having the patient pay for the balance of the prescription the DR prescribed.  
This needs attention.
I was very glad to see your segment on MS, but wish that you could have spent more time talking about the "unseen" affects of this disease.  So many people know absolutely nothing about MS and don't understand how you can look fine, but feel lousy.  The fatigue is relentless.  I actually had one friend tell me to take some aspirin when I was having a bad day and that they knew people who had MS and they just got up and kept going even when they didn't feel like it!  People need to be better educated on this disease.


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