Medical mysteries

Posted: Tuesday, May 13, 2008 12:35 PM by Barbara Raab

By Robert Bazell, NBC News Chief science correspondent

Tonight we begin a series called 'Medical Mysteries' about autoimmune diseases. We picked the title because these very common conditions remain incurable, difficult to treat, and poorly understood.

An autoimmune disease strikes when the exquisite system that protects our bodies from viruses and bacteria goes haywire. The white blood cells and the proteins called antibodies turn on us. The result can be damage to almost any organ in the body—chronic illness that can be severe and even life-threatening. The National Institutes of Health has a good primer on autoimmune diseases.

In the series we will examine three of the most common autoimmune diseases: lupus, rheumatoid arthritis and multiple sclerosis.

In most cases, autoimmune diseases strike women far more often than men. Why that is so remains one of the biggest mysteries of all. Doctors have long assumed that women’s immune systems have to be different because a women’s body must tolerate a foreign object –- a fetus. But no one has been able to pin down the reason.

As Dr. Stephen Hauser, a neurologist at the University of California, San Francisco told me: "It's an aphorism in medicine that autoimmune disease may be a price that women pay for successful reproduction. This said, we don't understand exactly why female gender is associated with autoimmune diseases and why it is associated so strongly in some and less strongly in others. Some of the explanation must lie in hormonal effects that relate to the female, but we are striving to find the details.”

This evening’s report focuses on Lupus. The Lupus Foundation of America’s website is an excellent source of information.

We tell the story of one woman, Jennifer Pearce. Like so many patients with autoimmune conditions, she suffered through difficulty with the diagnosis. In far too many cases this leads patients to believe (or to be told by a doctor) that it is all in their head. Patients with autoimmune conditions also can manage to look good and feel horrible, making it very difficult to function in the world.

There are few truly effective treatments for Lupus and they often carry severe side effects. A great hope for finding better treatment lies in some recent discoveries about genes associated with the disease. The physician-scientist we interview. Dr. Lindsay Criswell also of UCSF is heavily involved in this effort and you can read about her research here.

Editor's note: The Lupus Research Institute is another good educational resource. The organization also has a website about clinical trials.

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Comments

Please include the disease TTP in this weeks stories. This was a rare disease that is being now being diagonsed more. I have had this for almost 10 yrs. with no family history of this disease. there is not enough awareness or research on theis disease.

Thrombotic Thrombocytopenic Purpura

Cheryl Lynch (Dallas, TX) (Sent Monday, May 12, 2008 6:08 PM)

Though not making light of Lupus, this story didn't tell what a killer the disease can be. My niece was diagnosed with TTP at 11 and dead from Lupus just before her 19th birthday. A cure must be found, please donate to the Lupus Foundation of America.

Becky, St. Louis Missouri (Sent Monday, May 12, 2008 7:06 PM)

I would like to also see more information on RA (Rheumatoid Arthritis). I could truly relate to Jennifer Pearce's story because I too felt "crazy." I was always fighting upper respiratory infections, had severe joint pain and stiffness in the morning and a sensitivity to the sun. My ANA is negative, but my Rheumatoid Factor is in the 70s. After an infection and horrible scar resulting from a biopsy and numerous doctors (infectious and Rheumatology), I was finally given a diagnosis. I, like Jennifer, look perfectly healthy but agnonize inside, unable to get up after sitting on the floor to play with my young daughters.

Francesca Houstn, Texas (Sent Monday, May 12, 2008 7:09 PM)

Thank you for your research and coverage of Lupus. I recenty had to retire from the Marine Corps after 27 years of service and return home to take care of my family. My wife was diagnosed over ten years ago and it's been a roller coster ride ever since. My wife has been told at times that she is stressed out. Usually that happens when a doctor just doesn't understand the disease. There are not enough information out there. I took down Dr. Stephen Hauser information. I wish we had an expert more local we could trust. I will be watching this series and look forward to gaining more information. Thank you again for bringing Lupus to a hightened awareness.

Mark E. Michielsen, Virginia Beach, VA (Sent Monday, May 12, 2008 7:19 PM)

I have been diaganosed with orthostatic hypotension supposedly caused by peripheral neuropathy with an unknown cause. I have had many episodes of passing out that led up to this. MRI shows some white matter leisons. Family history of lupus, lou gehrig's disease and parkinsons, but so far just a dead end. Any suggestions on a direction. I have been tested for diabetes and rare auto immune diseases. I can't drive or work at this point and it's been very frustrating for me and my family. I have been to neurologists and cardiologists and they have just been spinning their wheels. Please help me.

vanessa lopez, norfolk, virginia (Sent Monday, May 12, 2008 7:21 PM)

Thank you for bringing this mysterious and individualized disease into the public eye. I have been dealing with this strange disease for 20 years. No medications really help. Knowing "my lupus", what triggers flares for me, and listening to my body when it starts sending me the warning signs is all I can do at this point. Best of luck to Jennifer Pearce and all the others out there moving forward in "their lupus".

Cathy Cott, Tahlequah, OK (Sent Monday, May 12, 2008 7:22 PM)

Lupus can also occur in children, and there is a higher incidence in women of color: African-American, Hispanic and Native American. My closest friend's daughter passed away in February from complications related to Lupus. Your piece focussed on someone who's symptoms are managed right now, and that is a blessing. Not everyone is that fortunate.

Thank you for raising Lupus awareness !

Denise Meehan, New York, NY (Sent Monday, May 12, 2008 7:26 PM)

Thank you for covering this disease. I had been complaining for over a year that something was wrong. For months I felt like I was being treated as though I was a hypochondriac. I persisted and finally received the blood tests in September 07 that confirmed I had Lupus and also Sjogren's Syndrome. Also I had breast cancer in 2005 and had a very hard time healing from a lumpectomy. I later found out that the lupus has caused peripheral neuropathy. Finaly though, I am on a combination of drugs that make my days easier to tolerate. It's a trade off of feeling really tired or really sore but I have more good days now and my family appreciates that.

Lynn Surprenant, Brown City MI (Sent Monday, May 12, 2008 7:37 PM)

I am so glad to see this series. I have battled Hereditary Angioedema all my life. It is a rare C1-autoimmune disease with a very high mortality rate. The allergic response goes haywire and turns on the person with it.Death usually comes with airway asphixiation...but it too was all in my head! My sister has Lupus and my mother died from complications from Rheumatoid Arthritis at 62. For more info you can go to www.haea.org and thank you so much for doing this series.

Michelle Boynton (Sent Monday, May 12, 2008 7:39 PM)

I suffer from RSD (Reflex Sympathetic Dystrophy) which is a rare nerve disease. For the last 6 months my joints and muscles are hurting to a point where I can hardly walk. All blood tests came back negative and my doctor gave up. Any suggestions? Should I be tested for Lupus?

Manuela Smith (Sent Monday, May 12, 2008 8:08 PM)

It was a big surprise to catch this feature! Autoimmune diseases are so often mis-diagnosed and ignored. There are so many of them as well! Had I not been diagnosed and treated for my own condition, I would be in a wheelchair now. I am lucky, but I know that for one of me, a lucky one, there are likely ten other people in serious pain and likely disability out there because of inconsistent diagnosis practices. Or laziness? I don't know, but I hurt for each person trying to find out about why they hurt.

J Sherman (Sent Monday, May 12, 2008 9:00 PM)

Thsnk you for your insightful resport. I am a critical care RN and I see these autoimmunie diseases very frequently. The symptoms are devastating to the lives of autoimmune sufferers.

Carolyn Turner, Sacramento, CA (Sent Monday, May 12, 2008 9:17 PM)

Please consider profiling fibromyalgia/chronic fatigue syndrome. I have been ill since 1986, with a dizzying array of disabling symptoms, yet I look healthy. The symptoms seem disparate, yet people (primarily women) of all ages, walks of life, and ethnicities exhibit astonishingly similar symptoms which defy diagnosis and explanation. And few people believe we are ill. Thanks!

Chana Meddin, Bellingham, WA (Sent Monday, May 12, 2008 9:31 PM)

Thank you SO much for highlighting lupus as a "mystery illness". I have had lupus for over 15 years now and am STILL fighting with doctors over treatment. I am also fighting with Social Security for disability because I can no longer work due to fatigue and pain. I have been repeatedly told that I don't "look ill" therefore I must be healthy -- this even from doctors. Having lupus has been devastating for me. I have a graduate education, but at times I cannot think straight or even track a conversation. I get fatigued at the slightest thing. At times I am in such pain that I can only lay in bed and cry. Yet I am told I am just "being dramatic" and that really if I wanted to, I could go to work. Please, please, if you know someone with this illness have some compassion and understanding for the demoralizing effects having a hidden disability and "mystery" illness can have on them.

MG., Modesto, CA (Sent Monday, May 12, 2008 9:32 PM)

I was glad to see that Lupus is making the the news. I'm 41 and I have suffered with Lupus for 20 years. We can only hope that more research of this monster disease is in the works. Lupus is a very painful disease. My son is what makes me want to fight this monster. God blessed me with JB 12 years ago. My heart is with all who suffers from a deadly diseae.

Laura Pitetti, Buxton, N.C (Sent Monday, May 12, 2008 9:43 PM)

I am a male who was diagnosed one year ago with an autoimmune disease called Relapsing Polychondritis (RP). RP is a severe, episodic, and progressive inflammatory condition involving cartilaginous structures, predominantly those of the ears, nose, and bronchial tree. Other affected structures may include the eyes, cardiovascular system, peripheral joints, skin, middle and inner ear, and Central Nervous System. For me RP's main attack has been my ears (inner & outer) causing sharp pain and vertigo. I have so many people tell me that I look great and yet, I feel terrible on the inside. Many people just don't understand. There can be so much pain. I, too have wondered if I am "crazy." When I feel good, I can't imagine that I feel so bad much of the time. And the medicines have not helped yet. Quite often they make me feel much worse. I take the medicines because I know how destructive RP can be. I find that positive thought helps me get through the toughest times, not to mention each day. Best of luck to everyone with an autoimmenu disease!

John Miller, Penna. (Sent Monday, May 12, 2008 9:56 PM)

The issue of Lupus among men has been in the dark, since it affects such a small percentage of the male population and it affects women for the most part. For men like me who had been misdiagnosed for many years the ramifications and stakes are higher. It carries a stigma since we are supposed to "tough it out", and it's a "women thing". As an Air Force retired individual I was, many times, labeled as a malingerer, misdiagnosed and treated as having severe headaches, a bad case of the flu, or muscle aches, and treated with motrin. I have had 7 or 8 cases of aseptic meningitis, not to mention the possibility of several misdiagnoses without a spinal tap to confirm it. These were also misdiagnosed initially as bad cases of the flu, but correctly diagnosed after a spinal tap. After retirement I was diagnosed with lupus by the Chief of rheumatology at the Univ of Maryland. He was able to easily come to the diagnosis since he was familiar with this condition as prevalent among hispanics in particular Puerto Rican men.
Maybe you, Mr Basell, or somebody out there with influence, could present a different angle, particularly the I am bringing now, to NBC's large audience.
Thanks in adcance; I greatly enjoy your health reports. Dave R

David Rivera (Sent Monday, May 12, 2008 10:20 PM)

Please do a segment on Scleroderma. Scleroderma is another one of the "almost-invisible" autoimmune diseases. Like Lupus, it affects the skin, internal organs, and joints. "Scleroderma" means "hard skin", and it has been called "the disease that turns people to stone". In Scleroderma, excess collagen deposits occur in organs, skin, etc., causing scar tissue to form. I was misdiagnosed with chronic fatigue syndrome, "new mother's fatigue" and hypochondria, before I was diagnosed with Scleroderma in 1993. Although Caucasian men can have Scleroderma,it is more common among African-American women (I am one).Native American and Caucasian women also can develop it. It has been my experience (until I was diagnosed) that Black women with Scleroderma are more likely to be misdiagnosed or their complaints not taken seriously. I had been seen by various white dermatologists in my HMO, but they hardly touched me during my examinations. I was eventually diagnosed by an Asian dermatologist. She actually touched me, and felt my skin. Because other dermatologists had misdiagnosed me repeatedly, they were called in to actually feel my skin and feel how thick and hard it was. They also took pictures of me to teach other doctors to recognize the disease.

I am glad that NBC is reporting on these "orphan" auto-immune disorders.

Tomisa Starr, Sacramento, CA. (Sent Monday, May 12, 2008 10:24 PM)

I thank God for this series. I have been diagnose with Fibromyalgia[FMS]for the past 5 years. there is no know cure as of this day and there are over 8 million women and men[few] that are dealing with this illness. There is very little any Dr. can do. The muscles and joints become so stiff and painful and the fatigue can be overwhelming. It cannot be diagnosed by test [blood or x-rays]and does not affect the physical appearance. After attending several Doctor's and Specialist and all the test came back negative, only then was it discovered. My heart goes out toward the children that have been diagnosed with this illness. I feel at times that I am having an "outer body experience". I pray for a cure for all of us that have these different.difficult and poorly understood condition.
Thank you Mr. Robert Bazell for speaking on behalf of us all. From my understanding those that have been diagnosed with Lupus and MS have FMS in some cases. Thank you once again.

Debra Williams (Sent Monday, May 12, 2008 10:41 PM)

As someone who has lived with Lupus for almost 30 years, I was SO happy to see if featured on your program. It took a great deal of persistence on my part to get a diagnosis. There have been many ups and downs. I was on steroids for more than 10 years and a variety of other medications. I have been told to my face that I didn't look sick & so I asked "how do you want me to look?" Pain is something I live wiht every single day. About six years ago, I was diagnosed with breast cancer; had a mastectomy & chemo. And yet I keep on going-I'm not sure what gives me the will. It has not been easy-there are some days when I don't even feel like getting out of bed, but I do. It's commendable that you have chosen to highlight diseases like this & not wait until someone famous announces their diagnosis.

Jacqueline Evans, Odenton, MD (Sent Tuesday, May 13, 2008 12:44 AM)

Thank you for featuring an auto immune disease on last night's news. I was diagnosed with Sjogren's Syndrome in 2002 and struggle with it daily. My eyes are so dry that I have not shed a tear since 2001, and are increasingly sensitive to light and touch. They "ache" daily. Additionally, I cannot eat a wide variety of foods since my mouth is too dry to process them. The disease has not only affected my physical health, but my mental health as well. I am very self conscious about talking to people since my eyes often have visible residue that cannot be washed away. Once a direct eye contact type of person, I tend to shy away from it now. I also do not like to eat in front of others since it is difficult to move food around in my mouth, hence making chewing, talking and smiling aferwards potentially embarassing. Since it is considered a relatively benign condition there is not a lot of research dedicated to this specific disease. As has ben mentioned in the other blogs, it is difficult to look great on the outside and feel lousy on the inside. Thanks again for bringing autoimmune diseases into the news. Best of luck to those who suffer from them.

Kristie, Sudbury, MA (Sent Tuesday, May 13, 2008 8:37 AM)

Thank you for highlighting these conditions. I echo an earlier comment with my own plea to please consider profiling fibromyalgia. It took me six years to be diagnosed. I feel like I have been robbed of the life that I always dreamed of having. I would love to know if there are any advances being made in research on new treatments, and hopefully one day, a cure. Thank you.

Kimberly Cowern, Milford, Pennsylvania (Sent Tuesday, May 13, 2008 9:00 AM)

I so enjoyed your coverage of lupus last night. It was precise, unbiased and did not use the usual "scare tactics" usually portrayed in cases such as these. I suffer from multiple sclerosis and look forward with anticipation to your coverage of this miserable, yet "silent" disease. Good information given to the public keeps them aware and not fearful of we who suffer from these diseases.

Judy Zabriskie, Ashland, VA (Sent Tuesday, May 13, 2008 9:37 AM)

Great coverage on lupus, which is such a difficult and discouraging disease. I would want to add that a lot of exciting research is taking place with lupus and other autoimmune diseases as well--and that there is a lot that people with lupus can actually safely do to help find better treatments and a cure. The Lupus Research Institute, a nonprofit organization doing innovative research in lupus, is making breakthroughs in figuring out what goes wrong in the immune system of people with lupus, and what might be done about it. LupusTrials.org is a website we started along with LupusResearchInstitute.org to tell people with lupus about clinical trials happening in lupus. Once scientists figure out how and why the immune system sometimes turns on a person's own body in lupus, they'll also know a lot more about autoimmunity as a whole.

Andrea Peirce, New York, NY (Sent Tuesday, May 13, 2008 10:08 AM)

Western Medicine admits that it has no cure for Lupus. I think it is time to investigate other healing modalities, specifically Aurvedic Medicine. Their prescription for most degenerative dis-eases is to fast, to get rid of toxins. For more information use search in Youtube. type in 'Cure for Lupus'.
I think it is time for Western Medicine to take a hard, scientific look at this claim. Do the the double blind studies.
If you are a suffering from this disease now, test out fasting for yourself, while waiting for science to catch up.

Michael C Weir, Tustin, Ca (Sent Tuesday, May 13, 2008 11:12 AM)

Thank you for your coverage on Lupus last evening. Finally, it was refreshing to see some coverage of this disease. I have had lupus for 25 years - and just in the past 3 years was I formally diagnosed. The treatment is vicious, and the disease at times cruel. Like all other lupus patients, I worry daily about the damage being done to my vital organs. Thank you again for your coverage !

Lynne Kinney, Lakewood CO (Sent Tuesday, May 13, 2008 11:14 AM)

Please consider adding fibromyalgia. There are many people who just think sufferers are complaining or looking for an excuse not to do something when you say you're tired or hurting.

Shantella Benson, San Pedro, CA (Sent Tuesday, May 13, 2008 11:39 AM)

Just stumbled on this information while doing research as I was just diagnosed last week with lupus. Finally a reason for not feeling well, while looking good and trying to stay active as a single self employed 42 yr old caucasion female. Skin rashes and pain in joints and muscle tissue, fatigue and stress often will lead me into episodes of migraine. Vertigo, visual disturbances and tinitis are more often than not a part of my daily routine. So... I guess I will now welcome myself to the rollercoaster ride!!! Thank you for all of the helpful comments and information!!

Cindy Mullins, Lubbock, Texas (Sent Tuesday, May 13, 2008 11:46 AM)

Thank you so much for highlighting the devastating disease known as lupus. I know I have found a lot of assistance from the LFA's monthly Webchats, and their message boards. I would recommend that anyone, whether recently diagnosed, or you have been living with lupus for a long time, visit the lupus.org Website to see all the great resources they have. Thanks again for putting a spotlight on this disease.

William Davis, Woodbridge, VA (Sent Tuesday, May 13, 2008 1:21 PM)

I would like to see something done on Turner's Syndrome. This is a chromosomal disorder that affects females. My little girl has this condition.
We only found out when she was 14 years old.
She has to see seven different specialists.
Autoimmune disorders can go along with Turner's Syndrome. There are women walking around with this and don't even know they have TS until they start to conceive. Please help us to get the word out about Turner's Syndrome ! 1 in 3 thousand !
These girls are "walking miracles" 99.9% of them are spontaneously aborted. Doctors are diagnosing in-utreo and are recommended selective abortion. My little girl who is 15 wants the world to know that it is okay to be blessed with a Turner girl !

Elinor Mullin, Fayetteville, Arkansas (Sent Tuesday, May 13, 2008 1:26 PM)

As a lupus patient and as Chairman of the Board of the Lupus Foundation of America Greater Florida Chapter I cannot thank you enough for doing a segment on lupus. The more awareness that can be raised the more interest there will be in doing research to find the causes and cure. On behalf of the almost 90,000 Floridians with lupus thank you for giving the disease the coverage it deserves.

Maggi McQueen, St. Petersburg, FL (Sent Tuesday, May 13, 2008 2:21 PM)

I was diagnosed in 2006 with Rheumatoid Arthritis at age 37. No family history. It would be an interesting story angle to also detail how insurance companies will not cover potentially helpful alternative treatments which in some cases have better results than our "wonderful" health care providers. It is difficult when first diagnosed to get all the options available to you. I had to research it myself and argue with my doctors. Luckily, I was VERY quickly diagnosed, so I'm thankful for that. I do, however, resent doctors who won't open their minds to things like the Antibiotic Protocol.

Shelly Kempster, Sugar Land, TX (Sent Tuesday, May 13, 2008 2:28 PM)

It is a relief to have the spectrum of auto-immune diseases covered in a national forum. I was diagnosed with Ankylosing Spondylitis almost 2 years ago but it took much longer than that to find the answer. AS is basically a "cousin" to Rheumatoid Arthritis". It is by definition "arthritis of the spine" but it is so much more than that. It effects all my joints, ligaments, ribs, eyes, skin, energy, etc. I try to keep a healthy perspective knowing that it isn't cancer and shouldn't kill me but many days I do feel like dying because of the chronic pain and significant effect on my life with my husband and three young children. There are new treatments but so far none have provided me any relief so we just keep on praying and looking for a better answer.

Marvella McElya, Dallas, TX (Sent Tuesday, May 13, 2008 3:43 PM)

Please take another look at systemic lupus especially among male children. It is highly misunderstood and very dangerous as children can experience deadly organ damage and much more aggressive symptoms. My son was misdiagnosed and almost died before the right lab tests indicated lupus nephritis - one of the most serious types.

Jane (Sent Tuesday, May 13, 2008 4:01 PM)

I have had lupus (SLE) for 15 years and have experienced the disbelief from friends and coworkers that I was "making it up". More understanding and knowledge of the disease is essential to developing better treatments and possibly a cure. It also helps lupus patients feel like someone actually understands what they're going through. We are not alone!

Lori Belvedresi, Pine Bluff, Arkansas (Sent Tuesday, May 13, 2008 4:11 PM)

I was diagnosed w/Lupus 18 months ago. It took me a while to understand the condition (still a work in progress), but my employer doesn't grasp it yet! Some days it is so hard to get out of bed. You never know where it is going to strike next time you have a flare. I have had symptoms since the early 80's but just blew them off because: 1. I hate going to the Dr. & 2. I looked fine. The condition reached a point in 2006 where I finally had to see someone. After what seemed like pints of blood drawn and too many specialists and test to mention. Lots of $ later I was diagnosed. I have decided to just take charge of my own care & treatment. No more doctors! No more pills! Thank you for your segment on the news last night.

Claudia Seskar, Divide, CO (Sent Tuesday, May 13, 2008 4:45 PM)

I identify with the frustrations of living with this disease. However,in my case, I find it may be even more difficult.I have been diagnosed with an undifferentiated connective tissue disease or mixed autoimmune disease. According to the doctors, these terms are synonymous. This means I have an autoimmune disease but they have no idea what it is. It has the hallmark symptoms of Rhumatoid Arthritis or Lupus but not enough of them to be diagnosed. It is evident that the medical community does not know much about the diseases that have been termed let alone the ones they cannot even define. It might be interesting to find out how many women have been diagnosed with undifferentiated autoimmune disease.

Rachel Ariela Fishman, Cleveland, OH. (Sent Tuesday, May 13, 2008 6:51 PM)

I am a teenager and in december I was diagnosed with juvenille rheumatoid arthritis. It is just as bad as rheumatoid arthritis, if not worse. I am surprised you don't address this. I have to deal with injections, prejudices at school, uninformed teachers, confused friends, homework troubles (due to increased inflammation in my wrist), not being able to play my favorite sports, run, walk, etc. etc. I am very shocked, to say the least, that you do not discuss this. Why not? Just curious. It is a major problem in America among kids. Not just teenagers but also kids as young as two years old.

Samantha H., Gainesville, FL (Sent Tuesday, May 13, 2008 7:01 PM)

As everyone else, thank you so much for this segment on Lupus. It has taken 43 years to get the diagnosis of Systemic Lupus as I finally became so ill and lost my voice for over 3 years now. It is hard for family and friends to understand when one day you are doing well and the next day or hours you have taken a down hill turn. Hopefully your piece will bring new awareness as well as funding for research. Maybe now people will know that we are not "making it up" and that "its all in your head".
Sharon/New Mexico

Sharon Young, Santa Fe, NM (Sent Tuesday, May 13, 2008 7:10 PM)

I sure hope that the question of WHY the traditional medical establishment takes so long (more than 7 years on average in most cases) to diagnose autoimmune disorders such as lupus, celiac, RA... is examined, even if no good answer is arrived at. I think it mostly has to do with Doctor's training, but also with insurance reimbursement.

Also, didn't Charles Kuralt (sp?) have lupus?

Bill in Keizer, Oregon (Sent Tuesday, May 13, 2008 7:46 PM)

My daughter diagnosed herself in Sept.2002 at the age of 14. She was reading a book about a teenage girl with lupus. My daughter recognized the symptoms she herself was feeling. She told me she thought she had lupus. She was diagnosed by rheumatologist one month later. If she hadn't been so in tune with her body she might not have recognized the symptoms. We almost lost her in the June of 2003. All her organs became involved. She spent 14 days in hospital, then months of chemo.
She is now 20 and doing good. She was just denied disability, because she looks fine. We were glad to see the program feature lupus. good luck to all who share this terrible disease and other autoimmune diseases.

Karen, Salina, Ks (Sent Tuesday, May 13, 2008 10:45 PM)

I would like to submit comments regarding the 2 reports on autoimmune disease and women. I am disappointed that no mention of diet/lifestyle were mentioned in regards to gene expession of those at risk. Have you reviewed the connection with low-deficient levels of vitamin D? How about the gluten connection and gluten sensitivity? An excellent rescource for would be the VITAMIN D COUNCIL (check out the excellent write up in the Toronoto Globle earlier this year) and Dr. Rodney Ford (Gluten Sensitivity) as an experienced pediatric gastroentrologist diagnosing and treating gluten sensitivity diseases. It appears that the drup industry has the upper hand in how these diseases are treated. Too many drug related commercials are aired during these stories. My guess would be that a drug company is marketing one of these drugs for treatment. I am a well educated & experienced dietitiran/nutritionist that has seen improvement with these types of conditions with nutrition & lifestyle management. It would be much appreciated if a story were done on the prevalence of vitamin D deficiency in this country and health issues than can occur as a result based on NEW RESEARCH.

June Gnass, Durham, CA (Sent Tuesday, May 13, 2008 10:45 PM)

I am a 48 year old Hispanic woman who has battled Lupus (SLE) for 17 1/2 years. I was diagnosed during my first pregnancy, third trimester. My doctor thought I miscarried as he could not detect a fetal heartbeat during a routine appt. I was hospitalized and they were able to detect a faint heartbeat. My son (fetus) had "congential heartblock". He was born with a planned C-section and was to immediately have a pace-maker inserted at birth. Doctors decided to hold off on surgery for a couple of days and monitor his heart. He remained in Neo-Natal ICU for 4 days. He came out of heartblock after 4 grueling days. He was born 17 1/2 years ago and is healthly today. He's my miracle child. I still battle Lupus and had to Disability Retire from my career of 23 years. Lupus was taking control of my body. Everyday I wake up I give thanks to the Lord for giving me another day. I became a Lupus Awareness Advocate and participated at Health Fairs to help educate anyone that needed information on this disease. I have really slowed down and face other medical challenges....Rheumatoid & Osteo Arthiritis, Raynaulds, Fibromylagia and Restless Leg Syndrome. My one complaint about this disease is there really needs to be more AWARENESS out there. It's get's old when you constantly hear "But, you don't look sick".... my theory for all of those that do not have this disease...walk in our shoes for a day and get back to us. I'm just thankful for each day that I have.

Pauline Garcia, Sacramento, CA (Sent Wednesday, May 14, 2008 12:07 AM)

I can't thank you enough for this series. I am an energetic woman who has suffered from Lupus for over 10 years. I was diagnosed at 27, right when i was discovering myself and my career path. Lupus derailed me and it has taken me a very long time to get on a course that i am happy with. No one seems to care about this disease because it is not visible in the ways that so many other diseases are - we need help from the media (Oprah are you listening?) to raise awareness to find a cure. there have been very few advancements in the last 50 years and most of us with Lupus do not have the energy (literally) to organize...we need help to find a cure!! Thank you for doing this piece - it was the best one I had seen on the subject.

Sally, Los Angeles, CA (Sent Wednesday, May 14, 2008 12:18 AM)

Are you going to do a similar segment about diseases that affect primarily men? Men's health issues get no coverage in the media despite the fact that their average life span is significantly shorter than ours and they suffer from a number of diseases that hit them disproportionately. Please consider improving your coverage of men's health issues.

Glenda (Sent Wednesday, May 14, 2008 1:35 AM)

I am a 55 yo female, diagnosed with Polymyositis in 2002...now have fibromyalgia as well. Would love to see a segment regarding the immune disorder, Polymyositis, which is so painful and hard to diagnose and manage.

Paula Ferris, Orlando, FL (Sent Wednesday, May 14, 2008 2:09 PM)

Has there been any further research or use of the treatment used by Dr. Thomas Brown of the Washington, DC area for nearly the last 40 years of his career? He successfully treated patients with RA, scleroderma, Sjogren's, etc with Tetracycline.
It's really a shame that the majority of RA sufferers are sent up the ladder of medications with no real long-term improvements. The book "The Road Back" lays out the case for therapeutic antibiotic therapy with this category of devastating diseases. Unfortunately most people will only try what is given to them.
We have 2 relatives with SLE who go the standard route with steroids, etc. Also, these diseases are so serious and it is sad that the uninformed among us are quick to judge and proclaim "It's all in your head."

Melinda Cooper-Polakoff, Calabasas, CA (Sent Wednesday, May 14, 2008 2:28 PM)

Everyone should check out the Antibiotic Protocol at roadback.org It works, it's safe and I'm living proof!

susie, Boston Ma (Sent Wednesday, May 14, 2008 6:27 PM)

HI MY NAME IS DORIS FIGUEROA, AND YES I HAVE LUPUS TO ABOUT FOUR YEARS NOW, I HOPE SOMEBODY READ THIS AND BRING ME THIS INFORMATION IN SPANISH IS VERY IMPORTANT TO ME. THANKS.

DORIS FIGUEROA,204 EVERGREEN PL SW WINTER HAVEN FL. 33880 (Sent Wednesday, May 14, 2008 7:58 PM)

I just want to add my thanks to you for this series on autoimmune disorders. I have Sjogren's Syndrome -- even lesser known than lupus -- along with mild rheumatoid arthritis. A number of people I know with Sjogren's have lupus and/or other autoimmune disorders. Sjogren's causes severe dry eyes, dry mouth, and other problems. Think of having to drink liquid with nearly every bite of food; and consider what it would be like to have extremely dry eyes on a continuing basis.
Unlike some others who have written,I do have a familial connection with my mother -- same combination as mine -- plus my sister, who has Hashimoto's thyroiditis.
The Sjogren's Foundation has done much to support local support groups, but its efforts are not well funded. Thanks for getting the word out about these diseases.

Nancy Crabbe, San Carlos, CA (Sent Wednesday, May 14, 2008 8:25 PM)

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