ABC World News story on POTS

Here's a link to the story by Diane Sawyer and ABC World News:
http://abcnews.go.com/blogs/health/2012/02/29/what-astronauts-have-taught-doctors-about-fainting/

I am hearing from many POTS patients who are angry at Dr. Jaeger for making it seem like POTS is just about small hearts and deconditioning, and the fact that he used the word "cure."  I encourage all of you to post your thoughts on the ABC news page underneath the story.

While the story wasn't perfect, overall, I think this was a good thing.  The fact that POTS was mentioned on ABC World News at all is a big deal.  Millions of people just heard about POTS for the first time in their lives.  The reporter did clarify at the end of the story that this was not a cure for all patients.  Perhaps Dr. Jaeger discussed this in his interview and they didn't use all of the footage?

He is one of the doctors I saw at Cleveland Clinic, and he did not diagnose me with a small heart.  In fact, I have had a cardiac MRI, and it showed that I have an enlarged heart.

It will be interesting to see if this leads to any additional media coverage.

Rare Disease Awareness Day is February 29th

1 out of 10 Americans will have a rare disease at some point in their life.  


Rare diseases are those diseases that effect fewer than 200,000 people.  There is little economic incentive for large drug companies to research these diseases, as the cost of drug development exceeds the potential profit, since rare diseases inherently have a small market.  Therefore, government, academic and non-profit organizations have to come together to foster research into rare diseases.


Help support rare disease research by clicking here.  For every click, the Lundbeck company will donate $1 to NORD, the National Organization for Rare Disorders.


Learn more about the 6000-8000 rare diseases that have been discovered so far.

Donate Gently Used Medical Supplies

Here in the U.S., we may complain about our slow and expensive healthcare system, but you know what... at least we have a health care system.  Most of us can get to a doctor in an emergency or a serious health situation, even if we don't have any insurance.  There are large portions of the globe where access to quality medical care and supplies is not possible.  There are free medical clinics in sub-saharan Africa where the doctors are forced to wash bloody bandages with soap and water and re-use them on other patients.  They simply don't have enough bandages, so they make do with what they have.   I cringe every time I am in the hospital here in NY and they throw out so many supplies that haven't even been used.  America is the land of plenty, but where there is plenty, there is waste.

Thankfully, there are groups like the Afya Foundation working to change that.  "Afya" means "good health" in Swahili.  The Afya Foundation, based out of NYC, collects surplus medical goods, exam tables, mobility devices, CT machines, and other supplies and equipment needed to run medical clinics in remote areas across the globe.  They also provide medical equipment to areas devastated by tragedy, like Japan during the 2011 earthquake and Haiti during the 2010 earthquake.

Over the past two years I have been sick with POTS, I have accumulated a few large boxes of saline bags, IV tubing, exam gloves, alcohol wipes, gauze and IV dressing kits.  I no longer need IV saline, so I will be dropping off my surplus supplies at one of the many churches and temples in NYC that serves as a drop off point for the Afya Foundation.

I encourage everyone to check out the Afya Foundation website and see if there are any supplies in your house you don't need that could possibly save a life in a far away place.  And for those of you who work in a health care setting, next time your office is throwing out an old exam table or other surplus equipment, please contact Afya to see if they can use it.  Your company may even get a tax deduction for donating.

POTS Is Not Rare!

My Dearest POTSie Friends,

PLEASE, please, pretty please with sugar on top.... please stop referring to POTS as a "rare disease!"  I know you mean well by this.  You are just trying to raise awareness.  This comes from the kindness in your heart and your compassion for others going through the same thing as you.  But I think there is a better way for us to raise awareness about POTS, other than calling it a rare disease.  It is NOT a rare disease.  It is quite common.

When we refer to POTS as a "rare disease," that only gives physicians and excuse not to have to learn about it.  If it's rare, they can assume they will never encounter a patient with it in their practice, so there is no need for them to have a solid understanding of it.  Plus, we lose credibility points with our doctors when we refer to POTS as a "disease."  POTS is not a disease.  It is a syndrome - a list of symptoms often seen together.  POTS can be caused by several known diseases, but in many patients there is no identifiable disease process associated with it.

Associating POTS with rare diseases also gives medical schools a reason not to teach new doctors about it - or makes it acceptable for POTS to be relegated to a footnote on page 487 of a cardiology textbook.

If the drug companies believe POTS is a rare disease, there will have no incentive to spend money on research looking for new and better drugs to treat POTS.  They are in the drug manufacturing business to make money, and if a disease is "rare," that means there are very few people who will buy the new drug they may develop to treat it.  That means they won't make a big profit on it, and that means they won't even be interested in developing a new drug in the first place.

If our elected officials hear that POTS is rare, then there is no incentive for them to fund research or education programs related to POTS.  If they think it is rare, they will assume that not many of the voters in their district have it, so there is no motivation for them to do anything about it.

If newly diagnosed patients are told their illness is rare, they are more likely to feel more alone and isolated.  They may feel more ostracized by their community.

Besides working against our own interests as a patient population, we are being factually incorrect when we say POTS is a rare disease.

POTS is not a rare disease.  In the United States, a "rare" disease is defined by federal law as an illness effecting 200,000 of fewer Americans.  POTS experts agree that there are approximately 500,000 to 1 million Americans living with POTS.  The latest projections are that 1 out of every 100 teenagers will develop POTS at some point during their teenage years.

For comparison, there are well known diseases with fewer number of patients (prevalence) in the US:

POTS - 500,000 to 1,000,000 people

Multiple Sclerosis (M.S.) - 250,000 people

Parkinson's Disease - 500,000 people

Another way to compare prevalence in the US:

POTS:   1 out of 100 teenagers

Autism: 1 out of 110 children

POTS is not rare.  In fact, it is relatively common.  There are probably POTS patients in every small town and big city in America.  It is just not a widely known disease.  We need to change that.

No one refers to M.S., Parkinson's or Autism as a rare disease.  Every doctor, and almost every member of the general public, knows the basics of these diseases.  Family doctors know the basic signs and symptoms, and know what type of specialist to refer a patient to when they suspect one of these diseases.  That is because the patient organizations representing each of these diseases raised lots of money and then strategically changed the way the public and the medical community views these diseases.  The M.S. Society, The Michael J. Fox Foundation (working on Parkinson's) and Autism Speaks are all well known and well respected in the medical community.  We need to this for the POTS community too.

This is why I have joined forced with the other POTS patients to form a new non-profit organization focused on raising funds for dysautonomia research and raising awareness amongst the medical community and the general public.  In the coming months, we will be adding POTS experts to our Board of Directors.  We will be creating a website that offers patients, caregivers and physicians exciting new resources.  We will be working with the NIH to create an federally recognized national health observance for Dysautonomia Awareness Month and POTS Awareness Week.  We will be working with local and national media outlets to share patient stories.  We will be working with medical societies to educate specialists, family doctors, ER physicians and ER nurses on how to identify, diagnose, evaluate and treat POTS.  We will make POTS a household phrase and an illness that every doctor in American knows how to recognize and treat.  We need medical schools, existing doctors, elected officials, policy makers, drug manufacturers and other patients to know that POTS is relatively common, and that we are a large enough "consumer" group to command attention of the medical industry.

I hope all of you will join me and the others who have already joined this effort.  If you would like to volunteer with our new non-profit, please e-mail me at potsgrrl@gmail.com. 

POTS - An Epidemic of Misdiagnosis

POTS patients and people with other forms of dysautonomia, such as Orthostatic Intolerance and Neurocardiogenic Syncope, are frequently misdiagnosed, sometimes for years before the accurate dysautonomia diagnosis is discovered.  Probably the most common thing they are misdiagnosed with is anxiety or panic disorder.  Some of the physical symptoms of POTS overlap with the physical symptoms of a panic attack, but they are definitely not the same thing.

Doctors are human.  Humans make mistakes.  Thus, doctors makes mistakes.  But mistakes and misdiagnosis within the medical field are much more common that most people realize.

In their book entitled, "Top Screwups Doctors Make and How To Avoid Them," authors Joe Graedon and Teresa Graedon, Ph.D. call misdiagnosis a silent epidemic and note that this issue has not even been studied until quite recently.

In 2009, doctors Peter Pronovost, MD, PhD and David Newman-Toker, MD, PhD wrote landmark commentary in the Journal of the American Medical Association: "Diagnostic Error - The Next Frontier for Patient Safety," which found that "[a]n estimated 40,000 to 80,000 U.S. hospital deaths results from misdiagnosis annually.  Roughly 5% of autopsies reveal lethal diagnostic errors for which a correct diagnosis coupled with treatment could have averted death."  Misdiagnosis "represent and enormous unmeasured source of preventable mortality, morbidity and costs."

While precise statistics on diagnostic errors remain unknown, because there is no uniform and mandatory reporting system, data from autopsies spanning several decades consistently reveal error rates of 10-15%, with some reports finding up to 20%.  And that only includes people whose misdiagnosis resulted in death.  The percentage of patients who are misdiagnosed, who survive and just live their lives thinking they have an illness they don't really have, and sometimes being given dangerous medications they don't need, is potentially much greater.  Add to that people who are really sick whose doctors misdiagnose them as having nothing wrong.

The Graedons also identify the #1 reason doctors misdiagnose their patients - overconfidence.  They note that "[h]umility, fallibility and uncertainty are not generally valued or modeled by medical mentors."  According to the international disease-classification system, there are over 13,600 recognized diagnoses (that number doesn't count new or yet to be discovered illnesses) and for each one there are a myriad of different remedies.  There are now 6,000 drugs and 4,000 medical and surgical procedures.  

Only a truly arrogant, and frankly ignorant, person could believe that he is capable of mastering all of this information - no less sorting it out within a 5 minute consult with a new patient.  Yet, many a doctor will scoff at his patient for asking questions, bringing a journal article for him to read or inquiring as to a particular diagnosis that the patient suspects he may have.  In fact, some studies have shown that the LEAST competent physicians are often the most confident in their abilities.  Why does that not surprise me?

In 2006, the New Your Times reported on this same problem, Why Doctors So Often Get It Wrong, "With all the tools available to modern medicine — the blood tests and M.R.I.'s and endoscopes — you might think that misdiagnosis has become a rare thing. But you would be wrong. Studies of autopsies have shown that doctors seriously misdiagnose fatal illnesses about 20 percent of the time. So millions of patients are being treated for the wrong disease.  As shocking as that is, the more astonishing fact may be that the rate has not really changed since the 1930's. "No improvement!" was how an article in the normally exclamation-free Journal of the American Medical Association summarized the situation."

The New York Times went on to state, "[u]nder the current medical system, doctors, nurses, lab technicians and hospital executives are not actually paid to come up with the right diagnosis. They are paid to perform tests and to do surgery and to dispense drugs.  There is no bonus for curing someone and no penalty for failing, except when the mistakes rise to the level of malpractice. So even though doctors can have the best intentions, they have little economic incentive to spend time double-checking their instincts, and hospitals have little incentive to give them the tools to do so."

Now, don't get me wrong, I don't think overconfidence is the sole reason people get misdiagnosed.  Sometimes diseases are simply hard to figure out.  Some of the blame can lay at the feet of the insurance industry and government insurance programs, which have turned medicine into a mass-production line of patients being pushed in and out of their doctors offices at the speed of lightening.  Blame can also go to the medical schools who value rote memory of facts and figures, rather than complex problem solving and 'out of the box' thinking.  There are lots of factors that add up to the unacceptably high rate of misdiagnosis.

In terms of POTS, Orthostatic Hypotension and Neurocardiogenic Syncope, misdiagnosis is extremely common. A large percentage of POTS patients get misdiagnosed as having "just some anxiety" or "it's just stress," "panic disorder," "generalized anxiety disorder," or even worse "malingering" or "looking for attention."

As a patient who was given a misdiagnosis like this by a doctor who was neither a psychologist, nor a psychiatrist, I can tell you there is nothing more disheartenting and frustrating for a patient who is looking for answers and who wants to get better and get their old 'healthy' life back, than being told they are just anxious or looking for attention.  Yes, some arrogant prick of a doctor, who doesn't even know me, decided that the reason I was passing out and having chest pains and losing weight rapidly and having swollen lymph glands and sheet drenching night sweats and diarrhea 10 times a day was because I was looking for attention from my husband because I was 31 and didn't have kids yet.  I was so shocked when he said this, I thought he was kidding around.  He wasn't.  Not that is was any of his damn businesses, but the reason I don't have children is that I am a busy career woman, who put herself through law school and her husband through grad school and saved up enough money to by a six bedroom house in a well-to-do zip code before I was 30, all while serving on the Board of Directors of several different charities and being active in local politics.  Yeah, I've been busy, and I thought it would be better to wait until my husband and I were ready financially and career-wise before we started popping out kids.  After my encounter with this bozo, I jokingly gave myself a new diagnosis, "want-to-slap-that-doctoritis."

Thankfully, I trusted my gut instincts enough to ignore him and to keep looking for answers as to what was going on with my body.  Sure enough, several months later, an intellectually curious neurologist decided to take me on as a patient and he figured out that I had severe autonomic neuropathy and POTS.  Last time I checked, you can't imagine your way to getting widespread nerve damage.  And then a year after the nerve damage was found, another neurologist figured out the cause of that nerve damage - an autoimmune disease was attacking my nerves - Sjogren's Syndrome - and it had already done some very serious damage.  So much for the "you're just looking for attention" diagnosis I got from that earlier doctor.  I'm not one to hold a grudge, because that is unhealthy. Having a grudge is not a problem, holding it in and letting if fester is the problem.  So the next time I ran into doctor bozo, I let him have it. 

To paraphrase the conversation.... "Hi, nice to see you too.  Hey guess what, you were TOTALLY WRONG!  I'm not making it up.  Turns out I have a life threatening autoimmune disease attacking my nerves and organs.  Oh, and nice to miss the low aldosterone I had!  That should have been a big clue.  Aren't you supposed to be an endocrinologist?  Maybe you should stop trying to be a shrink and focus a little more on your own speciality." Two of his nurses give me a high five after he left the room mumbling and one of them tells me he treated her elderly mother the same way.  He said she was just going through the change of life, and it turns out she had thyroid cancer!

And my story is pretty much the same as almost every other POTS patient I have met.  Why does this happen to us?


Could it be because the majority of POTS patients are women and there is still some lingering gender-based discrimination in the medical profession?

Could it be because the majority of POTS patients are young women - and there is a general resistance within the medical community to think that young people could be so sick?

Could it because the majority of POTS patients look very normal, and some doctors are naive enough to think that you have to look sick to be sick?

Could it be because POTS symptoms often don't show up on basic blood and urine tests, and too many doctors are unwilling to look beyond the basics?

Could it be because many doctors, especially those who graduated medical school before the mid-1990s, have never heard of POTS?

Could it be because doctors, even those who have heard of POTS, have no idea how to diagnose POTS?

Could it be because doctors are so rushed by our medical system, that they result to practicing hamster on a treadmill medicine and they don't have enough time to really listen to a patient with complex illnesses that come with a long list of complaints?

The answer to all of the above questions is a resounding YES.  


So what can we do to improve this situation?  Stay tuned for my next post on a new POTS education and awareness campaign targeting the medical community.