Would you consider a career as a singer if you had involuntary tics from Tourette Syndrome?

Well, it apparently didn’t stop 20-year-old Contemporary Christian musician Jamie Grace!

In fact, Grace attributes singing with helping her cope with her disease.

And now she is being rewarded with a Grammy nomination for best contemporary Christian music song, Hold Me.  The song features TobyMac, who is a Grammy winning Christian recording and hip/hop artist. He saw so much potential in the young artist that he signed her to his own record label- Gotee Records, in 2010.

2 Years from Symptoms to Diagnosis

Grace began to have symptoms of  uncontrolled movements and sounds (tics) at 9 years old, and was eventually diagnosed with Tourette Syndrome at the age of 11. She was given medication for the disease, but says that it caused her hair fall out and made her feel “like a zombie.” Her typically “bubbly” personally became more sullen and she lost her self confidence.

When she was 14, her grandfather gave her a drum set. She learned to play the drums, as well as piano, guitar, banjo and the ukulele. And she started to sing again, something she had become reluctant to do when she started to have symptoms.

Music became a way to relieve stress. And she noticed that the tics were less frequent when she was singing or playing.

After Her Hair Fell Out, God Had a Plan

After hearing a testimony by Christian singer Tammy Trent, Grace decided that God had a message and a plan for her- to bring a message of hope to others.

In 2006, she founded Teens with TS to help other teenagers diagnosed with the disease. “It’s all about taking control over what I can control and that’s saying, ‘Hey, I’ve got Tourette’s, but I can also play guitar, I can also sing and write songs about it” … Hopefully I can encourage other kids who are going through crazy stuff too.” The mission of Teen with TS is two-fold:

to just tell kids that you’re not alone in what you’re going through. And I wanted to raise awareness to Tourette because kids would bully me and pick on me and strangers would often times stair at me or mock at me.

Here’s Jamie’s Grammy nominated song:

15 Things to Know About Tourette Syndrome

1.  Tourette syndrome (TS) is a neurological disorder characterized by tics–involuntary, rapid, sudden movements and/or vocal outbursts that occur repeatedly.

2.  Motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking.

3.  Vocal tics might include repetitive throat-clearing, sniffing, or grunting sounds.

4.  Symptoms can change in number, frequency, type and severity–even disappearing for weeks or months at a time.

5.  Tics are often worse with excitement or anxiety and better during calm, focused activities.

6.  No definite cause for TS has been established yet, but considerable evidence points to abnormal metabolism of at least one brain chemical called dopamine.

7.  It is  estimated that some 200,000 in the United States have the disorder.

8.  The early symptoms of TS are almost always noticed first in childhood, with the average onset between the ages of 7 and 10 years.

9.  TS occurs in people from all ethnic groups; males are affected about three to four times more often than females.

10. Obscene language (coprolalia) is not a typical symptom of TS. Cursing, uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with TS.

11. The diagnosis is made by the observation of symptoms and by medical history. Blood tests and/or x-ray tests are not necessary.

12. Most patients experience peak tic severity before the mid-teen years with improvement for the majority of patients in the late teen years and early adulthood.

13. Because tic symptoms do not often cause impairment, the majority of people with TS require no medication for tic suppression.

14. Effective medications are available for those whose symptoms interfere with functioning. Medications called neuroleptics (such as haloperidol and pimozide) are the most consistently useful medications for suppressing tics.

15.  As a group, children with TS have the same IQ range as the population at large. But problems in dealing with tics, often combined with attention deficits and other learning difficulties, may call for special education assistance.

For more information about Tourette Syndrome, click here to go to the Resounding Health Casebook on the topic.

I think Jamie’s story is an inspirational one. I always appreciate when celebrities use their own illnesses as “teachable moments” for others with the same disorder.

I wish her good luck at the Grammys on Sunday!

Do you have Tourette Syndrome, or know someone who does? How do you/they cope with the disease?

Suzanne Somers is no stranger to medical controversy

For instance, the Three’s Company actress and Thigh-Master guru has claimed that her continued youthful appearance is due to  bioidentical hormone replacement therapy (BHRT)*.

In 2001, Somers was diagnosed with breast cancer. She had a lumpectomy and radiation, but declined to undergo chemotherapy.

In November, 2008, Suzanne Somers announced she was diagnosed with inoperable cancer by six doctors, but learned a week later that she had been misdiagnosed. During this time, she interviewed doctors about cancer treatments and these interviews became the basis of her book, Knockout: Interviews with Doctors Who Are Curing Cancer–And How to Prevent Getting It in the First Place. In her book, Somers promotes alternative cancer treatments, for which she received harsh criticism from the American Cancer Society.

This week, Somers revealed something new – a new breast, reconstructed using an experimental procedure!

The procedure, called Adipose Derived Stem Cell Breast Reconstruction, was performed at the Hollywood Presbyterian Medical Center last August by Plastic Surgeon Dr. Joel Aronowitz.

The procedure was first performed by Dr. Keizo Sugimachi in Japan, and later underwent research trials in several European centers.  Ms. Somers was enrolled as the first human subject in the U.S. research trial:

What are Adipose Derived Stem Cells?

Adipose tissue is just another name for body fat. Fat grafting, also known as fat transfer or fat transplantation, has been available for many years. In layman’s terms, it means sucking fat out of one (presumably undesired) place  and injecting it into another (preferred) one. However, according to Dr. J. Peter Rubin, Chief of Plastic Surgery University of Pittsburgh:

The biggest problem encountered with fat grafting is that fat can lose volume or be absorbed by the body over time, leaving less of an affect from the original treatment.

However, fat tissue is made up of more than fat cells. It also contains those darlings of gene therapy-stem cells! And fat tissue contains proportionately more stem cells than other tissues- roughly one stem cell per 100 fat cells, compared to bone marrow, which contains one per 250,000 to 400,000 cells.

Stem cells are special cells that can divide and change into diverse specialized cell types and can self-renew to produce more stem cells. In adults, stem cells act as a repair system for the body, repairing adult tissues by releasing chemicals that encourage growth and by encouraging the formation of blood vessels to nourish the tissues.

Using fatty tissue that is enriched with stem cells may prevent some of the problems associated with simple fat grafting.

How are they used in Breast Reconstruction?

According to Dr. Aronowitz, “Stem cell treatment has the advantage of producing a natural regrowth of fat tissue within the breast, giving it a soft, natural appearance and feel using the woman’s own fat.”

In the procedure:

1.  Fat tissue is removed from the abdomen, hips, and/or thighs (about 400-600 cc), using routine liposuction techniques.
2.  The removed fat is divided into two portions:

• One half is put into a special  machine which, in a “complex series of washings and high-speed centrifugations”(called a “celutron”-picture right), separates the fat from the stem cells. Almost a million cells on average are isolated from each 1 cc drop of liposuction fat.
• Those stem cells are then added to the other half of the collected fat.

3. The mixture is injected into the breast to fill in the defects.

Dr. Aronowitz also reports that:

Improved breast size is immediate, but the improved skin quality and regeneration or regrowth of fat takes about 3 to 6 months as the larger fat cells that do not survive the transfer process are replaced by new tissue regenerated by the large numbers of tiny stem cells. Improvement in the texture, quality and skin color of the breast damaged by surgery and radiation begins immediately and begins to show clinically in about 2 months.

Are there any concerns about the procedure?

For most new drugs or surgeries, doctors perform human subject research (a.k.a. clinical trials) on volunteers:

1. To see if the procedure does what it says it will do
2. To assess the safety of the procedure
3. To see how long the results will last
4. To see if there are complications that may show up later down the road

Dr. Rubins has outlined some of the issues that researchers are looking for in the clinical trials for this procedure.

1. Can the beneficial growth effects of stem cells cause regrowth of breast cancer cells?

Dr. Rubins has studied breast cancer cell growth in the presence of stem cells. Fast-growing cancer cells can be influenced by stem cells, but dormant (non-active) breast cancer cells do not appear affected. He recommends that the procedure would therefore be best for patients who are clinically free of cancer. This may have some bearing on the time of the reconstruction.

2. Will the surgery interfere with follow-up screening for breast cancer?

Any injection of fat into the breast may produce scaring and small calcifications in the breast.  These are some of the changes that radiologists look for on mammogram to detect cancer . Could this lead to a high rate of unnecessary biopsies? Fortunately, so far, the results do not appear to be different from those found in patients who have undergone breast reduction surgery. Making sure the radiologist knows your full medical history is probably the most important lesson here.

3. Are there any other complications we should know about?

As in any fat grafting procedure, the fat can form hard lumps. This is known as fat necrosis, and is a type of scarring. It may cause dimpling of the skin over it and can be tender to touch.

 In Summary:

Adipose derived stem cell breast reconstruction is an exciting prospect for breast cancer survivors. But it is still considered experimental and should be thoroughly studied before it should be considered the “standard of care.” Suzanne Somers is premature in her call for the procedure “to be the first option” for women with breast cancer.

The use of this technology in other areas of the body also shows great promise. Dr. Rubins says he is running a special clinical trial using adipose derived stem cells for wounded warriors with facial injuries.

———-
*BHRT is a poorly-defined term referring to the use of plant-based hormones that are identical, on a molecular level, with endogenous hormones in hormone replacement therapy. It has been promoted as a cure for many diseases beyond the relief of menopausal symptoms and/or reducing the risk of osteoporosis (the goals of traditional hormone replacement therapy). There is no evidence to support these claims.

Gwyneth Paltrow once again proves that she can promote a wealth a medical misinformation.

In the latest issue of Harper’s Bazaar, the 39-year old Academy Award winning actress waxes poetic about “all things Gwyneth”- diet, exercise, fashion, parenthood, to name a few.

Paltrow insists that she would rather have wrinkles than use Botox. Although she doesn’t seem to mind “little things, like lasers” and regular facials, often at the London-based Vaishaly Patel, which runs almost $400 for a 55-minute session.

But the thing that really got my eyes rolling was the reasons for once again turning to one of her seasonal cleanses:

“I have a lot of inflammation in my system, so I’m not having anything I’m allergic to—no gluten, no dairy, no sugar.”

And she can tell when it’s time to start another cleanse because:

“I’ll wake up exhausted; I can feel my adrenal cortex being really high. When I get into bed, my heart will pound, my skin won’t be good, I’ll feel cranky, and then I’ll just know it’s time.”

WOW! It’s amazing that Gwyneth is so in tune with her body that she can “feel” the outer layers of the tiny pair of organs that sit on top of her kidneys and which jointly weigh about one-third of an ounce! (The adrenal glands have an inner portion called the medulla and an outer portion called the cortex.)

BTW, the adrenal glands produce hormones that you can’t live without, including sex hormones and cortisol, which helps you respond to stress and has many other functions. (You can read more about the adrenal gland in our story about JFK and Eunice Kennedy Shriver.)

Gwyneth has embarked on a 12-week cleanse by the detox specialist, Dr. Alexandro Junger. This is one of many times she had been on this regimen, which coincidentally has been renamed “the goop cleanse.”

Detox diets claim that they can help chronic conditions that occur when the body become victim to a build up of “toxins.” As Dr. Junger puts it:

When our systems are overtaxed, they begin to break down in a multitude of ways. Allergies, headaches, depression, irritable bowel syndrome, fatigue, weight gain and insomnia are just a few of the symptoms that can result. The majority of these common ailments are the direct result of toxin build-up in our systems that has accumulated during the course of our daily lives.

Do Detox diets work? Is there any scientific evidence to recommend them?

Detox (short for detoxification) diets usually consist of a variable period of altered diet. This diet is high in fluids, high in fruits and vegetables, and eliminates alcohol, caffeine, and processed foods. Colonic cleansing (enemas to remove fecal material from the colon) are frequently included as well. Some diets also include special herbs or supplements which are supposed to enhance toxin removal.

“But the science behind the detox theory is deeply flawed“, says Peter Pressman, MD, an internal medicine specialist at Cedars-Sinai Medical Center in Los Angeles. “The body already has multiple systems in place — including the liver, kidneys, and gastrointestinal tract — that do a perfectly good job of eliminating toxins from the body within hours of consumption.”

Detox dieters often report a variety of benefits, but most of these improvements may be due to changes in the diet unrelated to any change in “toxin levels.” For instance, a decrease in headaches could be related to elimination of caffeine or alcohol in the diet. Decreased bloating just from eating less. Clearer skin may be related to better hydration.

Many individuals will have weight loss from these diets (mostly because they are low in calories), but it is usually due to a loss of fluids and some muscle, and not fat loss, and therefore the weight loss is temporary. Colonic cleansing, in general, is unnecessary except in preparation for colonoscopy. Colonic enemas can tamper with the body’s normal fluid and electrolyte balance and can lead to infection, irregularity, and dehydration. A high fiber diet works better for improving bowel irregularity.

Now back to Gwyneth:

According to the article, when she’s not detoxing, “I eat whatever I want. I like bread and cheese and wine, and that makes my life fun and enjoyable.” She’s also been seen chowing down on “bocadillo with Mario Batali in Spain or on fried chicken while filming Country Strong down South.”

These food binges seems to be interspersed with more a limited diet:

I’ll have a smoothie before [I take the kids to school], with protein and almond milk, and coconut water while I’m working out, and usually a green juice afterward.” Lunch “depends on how busy I am. A lot of times, I’ll just have half an avocado with salad dressing or rice cakes and almond butter and fruit, but if I have some time, then I’ll make a salad with protein or a turkey burger.

She also works out for an hour and a half at least 5 days/week. Then, she pulls out the big guns and goes on a cleanse.

Do these sound like healthy eating habits to you? Does anyone believe that Ms. Paltrow is really a role model for the “clean living” that she advocates?

Check out our articles on bulimia and eating disorders and tell me what you think.

Photo Credit: Terry Ricardson/Harper’s Bazaar

Republican Presidential candidate Rick Santorum had to leave the campaign trail when his 3 yr old daughter Isabella (Bella) had to be hospitalized. Bella has a serious genetic disorder called Trisomy 18, and was admitted to Children’s Hospital of Philadelphia with pneumonia in both lungs. According to Hogan Gidley, Santorum’s National Communications Director:

“Rick and his wife Karen are admitting their daughter Bella to Children’s Hospital of Philadelphia this evening. The campaign will cancel Rick’s upcoming Sunday morning Florida campaign schedule.  However, Rick intends to return to Florida and resume the campaign schedule as soon as is possible.

Bella is the youngest of the seven Santorum children. It was noticed at birth that she was “different” and at five days of age, Santorum and his wife Karen were given the diagnosis of Trisomy 18, meaning that their baby had 3 copies of chromosome 18 rather than the normal 2 copies. They were also told that the life expectancy of children with Trisomy 18 was usually very short and that she would probably not live more than a year. Despite these predictions, the Santorums told doctors that “we were not going to concentrate on her dying, we’re going to concentrate on her living, and do everything we can to help her.” Despite frequently hospitalizations, especially during her first year of life, Santorum remains upbeat:

Some people describe people like Bellas as disabled children…I look at the joy, the simplicity and the love that she emits and its clear to me that we’re the disabled ones. Not her…she’s got it right.

Reports from later today indicate that Bella is “improving” and is not on a respirator.

We wish her a speedy recovery.

What is a Trisomy?

The nucleus is the control center of human cells. It contains the genetic material- DNA- which codes for who we are. The DNA is organized into units called chromosomes. Humans have 23 pairs of chromosomes (46 chromosomes in total). One set of each pair comes from your mother (egg), the other from your father (sperm).

If the chromosome pairs fail to separate properly during cell division the egg or sperm may have a second copy of one of the chromosomes.  If this egg or sperm results is fertilized and becomes an embryo, the embryo may also have an entire copy of the extra chromosome. This is called a trisomy, as the individual has 47 chromosomes.

Trisomies can occur with any chromosome, but often result in miscarriage. For example, Trisomy 16 is the most common trisomy in humans, occurring in more than 1% of pregnancies. This condition, however, usually results in spontaneous miscarriage in the first trimester.

Of those trisomies that survive until birth, the most common is Trisomy 21 or Downs Syndrome. Trisomy 18 is also known as Edwards Syndrome is the next frequent, followed by Trisomy 13 or Patau Syndrome.

What is Trisomy 18?

Trisomy 18 is a relatively common genetic disease, occurring in 1 out of every 5000 live births. It is three times more common in girls than boys.

Most cases of trisomy 18 are not inherited, but occur as random events during the formation of eggs and sperm. This means that parents have done nothing before or during pregnancy to cause this disorder in their child.

The material in the extra chromosome interferes with normal development. These developmental issues are also associated with medical complications that are  potentially life-threatening in the early months and years of life. 50% of babies who are carried to term will be stillborn. Only 10% of children with Trisomy 18 survive to their first birthday.

What are the features of Trisomy 18?

The features of Trisomy 18 include:

• Clenched hands
• Crossed legs (preferred position)
• Feet with a rounded bottom (rocker-bottom feet)
• Low birth weight
• Low-set ears
• Mental deficiency
• Small head (microcephaly)
• Small jaw (micrognathia)
• Underdeveloped fingernails
• Undescended testicle
• Unusual shaped chest (pectus carinatum)

Other signs include eye abnormalities, umbilical or inguinal hernia, and a separation of the muscle that run down the center of the abdomen (diastasis recti).

There are often signs of congenital heart disease, such as a hole between the upper chambers (atrial septal defect) or lower chambers (ventricular septal defect) of the heart, or a patent ductus arteriosus (PDA).
Tests may also show kidney problems, including:

• Horseshoe kidney
• Hydronephrosis (swollen, water filled kidney)
• Polycystic kidney

According to the Trisomy 18 Foundation, “although less than 10 percent survive to their first birthdays, some children with Trisomy 18 can enjoy many years of life with their families, reaching milestones and being involved with their community.  A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independantly without assisted caregiving.”

Demi Moore has had a trying year.

The 49 year old actress filed for divorce from husband Ashton Kutcher, 33, after allegations of infidelity. Friends are concerned that she’s lost weight and looks  gaunt.

And this week, she was hospitalized after an emergency 9-1-1 call. According to her rep:

Because of the stresses in her life right now, Demi has chosen to seek professional assistance to treat her exhaustion and improve her overall health. She looks forward to getting well and is grateful for the support of her family and friends.

Now new information is emerging that “paramedics on scene were told Demi had been doing whip-its … inhaling nitrous oxide immediately before she fell into semi-consciousness and had seizure-like symptoms.”

What are Nitrous Oxide Whip-its?

While most people use nitrous oxide canisters to make whipped cream,  some inhale them for a brief, euphoric high.

Inhalants are a diverse group of volatile substances whose chemical vapors can be inhaled to produce psychoactive (mind-altering) effects. They are especially popular in young children and adolescents as they can be easily obtained.

Inhalants can be breathed in through the nose or mouth in a variety of ways (known as “huffing”), such as sniffing or snorting fumes from a container, spraying aerosols directly into the nose or mouth, or placing an inhalant-soaked rag in the mouth. Users may also inhale fumes from a balloon or a plastic or paper bag that contains an inhalant.

Nitrous oxide, commonly known as laughing gas or sweet air, is a chemical compound with the formula N2O. At room temperature, it is a colorless non-flammable gas, with a slightly sweet odor and taste. It is used in surgery and dentistry for its anesthetic and analgesic effects. It is known as “laughing gas” due to the euphoric effects of inhaling it, a property that has led to its recreational use.

How Do Inhalants Affect the Brain?

The effects of inhalants are similar to those of alcohol, including slurred speech, lack of coordination, euphoria (extreme happiness), and dizziness.

With repeated inhalations, many users feel less inhibited and less in control. Some may feel drowsy for several hours and experience a lingering headache.

Chemicals found in different types of inhaled products may produce a variety of additional effects, such as confusion, nausea, or vomiting.

By displacing air in the lungs, inhalants deprive the body of oxygen, a condition known as hypoxia. Hypoxia can damage cells throughout the body, but the cells of the brain are especially sensitive to it.

The symptoms of brain hypoxia vary according to which regions of the brain are affected: for example, the hippocampus helps control memory, so someone who repeatedly uses inhalants may lose the ability to learn new things or may have a hard time carrying on simple conversations.

What Other Adverse Effects Do Inhalants Have on Health?

Sniffing highly concentrated amounts of the chemicals in solvents or aerosol sprays can directly induce heart failure and death within minutes of a session of repeated inhalation. This syndrome, known as “sudden sniffing death,” can result from a single session of inhalant use by an otherwise healthy young person. Sudden sniffing death is particularly associated with the abuse of butane, propane, and chemicals in aerosols.

High concentrations of inhalants may also cause death from suffocation by displacing oxygen in the lungs, causing the user to lose consciousness and stop breathing. Deliberately inhaling from a paper or plastic bag or in a closed area greatly increases the chances of suffocation.

Harmful Irreversible Effects

Hearing loss—spray paints, glues, dewaxers, dry-cleaning chemicals, correction fluids
Peripheral neuropathies or limb spasms—glues, gasoline, whipped cream dispensers, gas cylinders
Central nervous system or brain damage—spray paints, glues, dewaxers

This is a wake up call for Demi. I hope she uses the opportunity to get the help she needs.

Source: National Institute of Drug Abuse

Correction:

Celebrity Diagnosis would like to thank our readers who rightfully pointed out an error in our story. Roy Scheider died in 2008 after a battle his battle with multiple myeloma. A link about Mr. Scheider’s death was embedded in a story about the death of another film legend James Farrentino who died this week, and implied that Mr. Scheider had just died as well.

However, Mr. Scheider’s story of multiple myeloma is still an important one, as it puts a familiar face on an illness that will be diagnosed in over 20,000 people a year.

The story has also brought comments from readers that gave us a valuable resource for those with multiple myeloma: The Myeloma Beacon at: www.mymyeloma.com

We apologize for any confusion this error may have caused.

“You’re gonna need a bigger boat!”

–Police Chief Martin Brody, Jaws, 1975

It is by these immortal words that actor Roy Scheider seems to be best known. The 75 year old  Jaws star died from complication of multiple myeloma.

Scheider’s acting career spanned almost 50 years, and included two Academy Award nominations. The first, for Best Supporting Actor, was for playing a fictionalized version of New York City detective Sonny Grosso in the 1971 classic  The French Connection. His second Academy Award nomination, this time as Best Actor, occurred in eight years later for All That Jazz, in which he played a  version of the film’s director and co-writer Bob Fosse.

In 2004, Scheider was diagnosed with multiple myeloma. In June 2005, he underwent a bone marrow transplant to treat the cancer.

Scheider had been receiving treatment  for the past two years at the University of Arkansas’s Myeloma Institute for Research and Therapy in Little Rock Arkansas. His wife, Brenda Seimer, told the New York Times the cause of death was complications from a staph infection.

What is Multiple Myeloma?

Multiple Myeloma is a cancer that develops from plasma cells,  a type of white blood cell in the bone marrow that make antibodies. Antibodies are part of the immune system which  help protect the body from germs and other harmful substances.Each type of plasma cell makes a different antibody.

When a plasma cell becomes cancerous, it divides into more cells in an uncontrolled manner. These abnormal plasma cells (myeloma cells) build up in the bone marrow, forming tumors in many bones of the body.

Myeloma cells make antibodies called M proteins and other proteins. These proteins can collect in the blood, urine, and in organs and can cause damage to those organs.

These tumors also prevent the bone marrow from making enough healthy blood cells. Normally, the bone marrow produces stem cells (immature cells) that develop into three types of mature blood cells:

1. Red blood cells that carry oxygen and other materials to all tissues of the body.

2. White blood cells that fight infection and disease.

3. Platelets that help prevent bleeding by causing blood clots to form.

As the number of myeloma cells increases, fewer red blood cells, white blood cells, and platelets are made. The myeloma cells also damage and weaken the hard parts of the bones.

What symptoms does multiple myeloma cause?

Sometimes multiple myeloma does not cause any symptoms. The most common symptoms include:

• Bone pain, often in the back or ribs.
• Bones that break easily.
• Fever for no known reason or frequent infections.
• Easy bruising or bleeding.
• Trouble breathing.
• Weakness of the arms or legs.
• Feeling very tired.

Sometimes  tumors can damage the bone and cause hypercalcemia (a condition in which there is too much calcium in the blood). This can affect many organs in the body, including the kidneys, nerves, heart, muscles, and digestive tract, and cause serious health problems.

Hypercalcemia may cause the following symptoms:

• Loss of appetite
• Nausea or vomiting
• Feeling thirsty
• Frequent urination
• Constipation
• Feeling very tired
• Muscle weakness
• Restlessness
• Mental confusion or trouble thinking

How is multiple myeloma treated?

Patients with early myeloma can do well for years without treatment and starting treatment early does not seem to help them live longer. These patients are often watched closely without starting chemo. Sometimes they will be given a medication called bisphosphonate to help protect their bones.

In those patients with more advanced stages of myeloma, a variety of treatment options exist, and may be used in combination. These include:

• Chemotherapy
• Targeted therapy
• High-dose chemotherapy with stem cell transplant
• Biologic therapy
• Radiation therapy
• Surgery
• Plasmapheresis(filtering of the blood to remove excess antibodies)

For more information about multiple myeloma, click here to go to the Resounding Health Casebook on the topic.

What is your favorite Roy Scheider film?

Which celebrity-recommended diet have you been on this year?

How’s it going so far?

For many celebrities, their livelihoods depend on their physical appearance and they rely on armies of personal assistants, schedulers, stylists, trainers and chefs to plan, manage and measure their diet and exercise regimens.

Obviously, most of us don’t have the time or resources to diet and exercise like celebrities do, but new technologies are closing the gap.

As an introduction to some of these Hi-Tech Health Solutions, we describe and discuss three examples in some detail. These technologies are not only examples of new classes of devices and approaches to diet and exercise, but also ones with which we have some personal experience.

Reinventing the Bathroom Scale with WiFi

Withings is a consumer electronics company that produces several devices to monitor various measures of health, specifically body weight, body mass index (BMI), fat mass and blood pressure.

The Body Scale  looks like an expensive electronic bathroom scale, and it is one, but it also has the capability of transmitting a registered user’s data through a wireless computer network to a personalized online account where the data can be tracked over time, viewed as a snapshot (pictured left) and visualized in various ways via a web browser or smartphone app.

Withings allows you to share your data by social media channels (Twitter, Facebook) and also to automatically upload data to an electronic medical record, specifically Microsoft HealthVault. You can also cause an email to be sent to your personal physician and this email notifies them that you want to share your data and gives the doctor a link to access it.

A Pedometer in Four Dimensions

Fitbit is a tracking device and software that records waking and sleeping activities and allows you to analyze your activity patterns in terms of both intensity and duration.

The device consists of a plastic clip about the size of your thumb and a small desktop “cradle” for both battery charging and wireless communication between the clip (tracker) that you wear on your clothing and the computer to which the cradle is attached by a USB cable.

The underlying technology is a 3D accelerometer combined with an altimeter encased, along with other electronics and a rechargeable battery, in the tracker clip.
You place the clip on your belt, shirt pocket, armband, or the bridge between the cups of a bra. Whenever you are within about 15 feet of the desktop cradle, activity data stored in the tracker is transmitted to your computer and then on to a personalized website where the data can be viewed through a web browser or smartphone app.

The tracker device is remarkably sturdy. After wearing it on pants pocket for 3 days, which included an airplane trip to another city and back, I had completely forgotten about it when I threw my pants in the wash! After full wash and dry cycles, the clip was still attached to my pants pocket and the device was undamaged and fully functional!

After purchasing and registering your device, the fitbit website provides a personalized “dashboard” that allows you to visualize and monitor your activity in a variety of ways, e.g. steps taken, calories burned, etc.

You can also manually enter other kinds of data, i.e. food intake, specific activities (e.g. walking, biking, XBOX gaming, etc.) and weight in your “journal.”  If you are a Withings scale user, you can link your Withings data with your fitbit account.  Like Withings, Fitbit allows a registered user to share his or her data via standard social media channels and automatically upload the data to Microsoft HealthVault.

Data-Driven Dining: C What U Eat

Research studies consistently show that people who track what they eat lose more weight than those who don’t. Traditionally, you had to write down what you ate in a paper food journal, a method that hadn’t changed much in over 200 years.

But now, thanks to the camera in your smartphone, you can easily create a food journal by taking pictures of what you eat and sharing the data with a diet buddy, dietician, social network or healthcare provider.

The first smartphone app to make food visual diet journaling the central feature of its approach was PhotoCalorie.

Developed by a team of physicians, nutritionists and computer scientists at Harvard Medical School, MIT and Boston University, PhotoCalorie is also a sophisticated nutrition search engine and a propriety nutrition database that greatly simplifies the tedious task of calorie counting.

PhotoCalorie can be used in a number of ways. Typically, the user takes a photo of a food item or entire meal and then enters a brief description of what’s in the picture. The nutritional content of the meal is then returned almost instantly to the smartphone. For example, the description “pork*2, broccoli, mashed potatoes” means two servings of pork and one serving each of broccoli and mashed potatoes. Alternatively, you can simply take the photo as a visual reminder of what you ate and enter the description of one or more meals later, say from your web browser at home.

PhotoCalorie also provides a realistic guide to food portion sizes, methods to set goals and monitor your progress and, as noted above, the ability to share your data with others. We’ve also seen an advanced prototype that is able to flag potential diet-drug interactions, such as the interference of Vitamin K-containing foods with warfarin (Coumadin) — PhotoCalorie can check a meal against a patient’s prescription drugs in Microsoft HealthVault.

The PhotoCalorie website also features an informative blog. Recent articles have described overweight crash test dummies, fructose as a “poison,” replacement of the “food pyramid” with the “healthy eating plate,” restaurant reviews and even some recipes. The PhotoCalorie app and service are free, and the company is currently offering, at no charge, a personalized nutrition assessment for users who journal their diet for a week.

e-Patients and Participatory Medicine, What?

We have written about this topic before: “e-patients” are those that are empowered, engaged, equipped and enabled and practice participatory medicine, which is defined as “a cooperative model of health care that encourages and expects active involvement by all connected parties as integral to the full continuum of care. The ‘participatory’ concept may be applied to fitness, nutrition, mental health, end-of-life care and all issues broadly related to an individual’s health.” In other words, patients, physicians and allied health professionals all have a seat at the table and work together to make the best health decisions for a given patient.

The manifesto of the e-patient movement was published in 2007, enabled by the Internet. It gave patients and/or their caregivers the ability to learn about their disease and to easily access “second” opinions through online health information resources. The movement has progressed to insist upon full access to medical records, including physicians’ notes, and the e-patient rallying cry is now “Gimme my damn data!”

In 2012, patients who are enabled by new technologies (such as those described above) are able to collect some of their own health data and store it in personally-controlled, electronic medical records. Recognizing this trend back in 2010, the editor of Wired magazine, Thomas Goetz (who also has a master’s degree in public health) published an influential book entitled The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine.

Are you ready to become an e-patient? Are you already one?

Photo credit: Rebecca Jonas, Corrective Holistic Exercise Kinesiology Practitioner, National Academy of Sports Medicine Performance Enhancement Specialist

Disclosure: Dr. Mark Boguski is a partner in Celebrity Diagnosis LLC and is a co-inventor of PhotoCalorie

Legendary Penn State Coach Joe Paterno has died of lung cancer.

Lovingly known as “Joe Pa” in his 46 year stint as Head Coach at Penn State, Paterno held the all-time Division I record for football coaching wins with a 409-136-3 record. His team went undefeated in five different seasons, and he won two national championships.

He was fired by Penn State in October for his lack of action in the sex-abuse scandal involving former assistant Jerry Sandusky. Only a month later, he was diagnosed with lung cancer and had a rapid down-hill course.

9 things you should know about lung cancer:

1. Lung cancer is one of the most common cancers in the world. The WHO (World Health Organization) says that about 1.4 million people will die of lung cancer each year.

2. It is a leading cause of cancer death in men and women in the United States. According to the National Cancer Institute: It is estimated that there will be 226,160  new cases and 160, 340 deaths from lung cancer  in the United States in 2012.

3. Cigarette smoking causes most lung cancers.

4. The more cigarettes you smoke per day and the earlier you started smoking, the greater your risk.

5. High levels of pollution, radiation and asbestos exposure may also increase risk.

6. There are two main types:

• Small cell carcinoma – about 13% of lung cancers are of this type which tends to spread quickly
• Non-small cell carcinoma – about 87% of lung cancers are of this type which spreads more slowly

7. Common symptoms  include:

• A cough that doesn’t go away and gets worse over time
• Constant chest pain
• Coughing up blood
• Shortness of breath, wheezing, or hoarseness
• Repeated problems with pneumonia or bronchitis
• Swelling of the neck and face
• Loss of appetite or weight loss
• Fatigue

8. Certain factors affect prognosis (chance of recovery) and treatment options.

• The stage of the cancer (the size of the tumor and whether it is in the lung only or has spread to other places in the body).
• The type of cancer.
• Whether there are symptoms such as coughing or trouble breathing.
• The patient’s general health.

9. For most patients with non-small cell lung cancer, current treatments do not cure the cancer.

If lung cancer is found, taking part in one of the many clinical trials being done to improve treatment should be considered. Clinical trials are taking place in most parts of the country for patients with all stages of non-small cell lung cancer. Information about ongoing clinical trials is available from the NCI Web site.

“Her behavior was egregious”

–Nancy Snyderman, MD on Today

“Thinking of getting into the leg-breaking business, so I can profitably sell crutches later.”

–Anthony Bourdain on Twitter

“Lets not burn Paula on the stake for advertising food the way we know it as a nation.”

–Comment on NPR

These are just some of the comments that followed the announcement that celebrity chef Paula Deen was diagnosed with Type 2 diabetes three years ago. The southern comfort food celebrity chef just made this information public this week in an interview with Al Roker on the Today show.

One of the more controversial elements of the announcement was that Deen is now a paid spokesperson for the pharmaceutical company that makes medications for patients with diabetes. Novo Nordisk and Deen have set up a website: Diabetes in a New Light™ to educate people about the disease.

Here’s what Today’s Professionals, Dr. Nancy Snyderman, ad executive Donny Deutsch, and lawyer and commentator Star Jones had to say about it:

Here are several conflicting questions this whole episode brings up :

1. Doesn’t Ms. Deen have the right to disclose her health information when and how she wants, or not to disclose it at all?
2. Is the fact that Ms. Deen continued to market high fat, high caloric meals to her viewers after she was diagnosed with diabetes (without stressing the possible health consequences) hypocritical?
3. Does it leave the impression that it’s OK to eat these foods because there are medications that can deal with health consequences later? Shouldn’t prevention take precedence over treatment?
4. Do celebrity chefs have a responsibility to mold the way we eat? Or do celebrity chefs just serve up what people want to eat?
5. Will the new website really have an impact on the way people deal with diabetes, or just act as an advertisement for the pharmaceutical company’s products?
6. How do celebrity endorsements affect the use of medications?
7. Should Paula Deen change her on-air cooking style?

I would love to know what you think. What side to you come down on?

The woman who openly claims she never met a stick of butter or deep fryer she didn’t like, Southern celebrity chef Paula Deen has Type 2 Diabetes.

Deen confirmed the recent rumors this morning on the Today show, in an interview with Al Roker. She says she was diagnosed with the disorder three years ago.

When asked by Roker why she waited so long to tell fans about it, whether she hid her diagnosis to protect her food dynasty, Deen replied:

No… I wanted to be able to bring something to the table when I made the diagnosis public.

Deen has partnered with pharmaceutical company Novo Nordisk, makers of Victoza – a once-daily, non-insulin injection (which Deen uses). They have  set up a website: Diabetes in a New Light™:

I’m excited to team up with Novo Nordisk on this initiative to show others that managing diabetes does not have to stop you from enjoying the things you love.

My sons Bobby, Jamie and I have teamed up with Novo Nordisk to create a program that will help you better manage your diabetes. We’re sharing some of our favorite recipes, lightened up, and creating new diabetes-friendly options that everyone will love. We’re also going to offer tips and advice to help you stay on track.

What is Diabetes?

Diabetes is a chronic disease where the body is either unable to make, or is resistant to a insulin. Insulin is a hormone that is used to break down and store energy (in the form of glucose or “sugar”) from foods. Without insulin, blood glucose and fat levels become too high and, over time, can damage blood vessels and vital organs.

What is the difference between Type 1 and Type 2 diabetes?

Type 1 Diabetes

Type 1 diabetes, which used to be called insulin-dependent or juvenile diabetes, is a disease where the body is unable to make insulin.

Scientists do not know exactly what causes type 1 diabetes, but they believe that a combination of genetic and environmental factors are to blame.

Diabetes is an autoimmune disease. This meansthat the immune system, which normally ignores healthy cells but destroys germs and foreign substances that could cause illness,mistakenly launches an attack on the body itself. In diabetes, insulin producing cells, called islet cells, in the pancreas are destroyed.

People may develop type 1 diabetes at any age, but it is frequently diagnosed before adulthood. It accounts for about 5%-10% of all diabetes cases, and affects approximately one in every 400 to 500 children in the U.S.

People with Type I diabetes must receive injections of insulin every day to control their disease.

Type 2 Diabetes

Type 2 diabetes, which was previously called non-insulin-dependent diabetes mellitus (NIDDM) or adult-onset diabetes, may account for about 90% to 95% of all diagnosed cases of diabetes.

In this form of the disease, insulin is still made (although possibly at lower levels), but the tissues have become resistant to the effects, leading to a rise in blood sugar.

It usually occurs in people who are over 40, overweight, and have a family history of the disease although it is also becoming more common in younger people, particularly adolescents.

Research indicates that type 2 diabetes is caused by a combination of environmental and genetic factors. Many risk factors make people more likely to develop the disease including obesity, high cholesterol, high blood pressure and physical inactivity.

Type 2 diabetes is more common among Native Americans, African Americans, Latinos and Asian Americans/Pacific Islanders.

Diet, exercise, weight loss, and oral medications to lower blood sugar are used to treat Type 2 diabetes.

What are the symptoms of Diabetes?

• Frequent urination
• Excessive thirst
• Unexplained weight loss
• Extreme hunger
• Sudden vision changes
• Tingling or numbness in hands or feet
• Feeling very tired much of the time
• Very dry skin
• Sores that are slow to heal
• More infections than usual

Other celebrities with Diabetes:

Type 1

• Nick Jonas – pop star; actor
• Mary Tyler Moore – actress; International Chairperson of the JDRF
• Anne Rice – author
• Casey Johnson – Johnson & Johnson heiress (Died from diabetes complications)
• Bret Michaels – rocker; reality TV star
• Jay Cutler- NFL player

Type 2

• Halle Berry – actress
• BB King – musician
• Sugar Ray Leonard – boxer
• Drew Carey – actor; comedian; game show host
• Tommy Lee – drummer for Motley Crue
• Billie Jean King – tennis player

For more information about Diabetes, click here to go to the Resounding Health Casebook on the topic.

Do you have diabetes? Do you think Deen’s new website site will be helpful?