Feb 14, 2012

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. 


  1. Wow! What an amazing post! It is shocking to read the statistics in comparison
    To other familiar diseases!!! I applaud your initiative, perserverance and dedication for raising awareness for POTS!!! Keep up with the fight,
    You are a motivation for all of us POTS patients to follow suit
    And demand excellence in our care!!

  2. You did a great job on this! As annonymous said it's amazing to see the statistics.
    I almost wish pots had categories,'ranges, or something because as you can see from the statistics it's not all that rare BUT the level of disabilty some of us live with is. Almost to the point that it seems like they are different disease. Ya know what i mean?
    There are people with pots who experience intermittent symptoms but then those that go through times they are completely bedbound. It's so hard to explain to people. I have an acquaintance who also knows someone else (beside me) with POTs. This other person has so much less struggle with it than I do that my acquinatce has been critical of me calling me wimpy and saying i don't try enough. NOT TRUE AT ALL. I do everything and my dr says and he's one of the best POTs dr's but there are still issues I have no control over.

  3. Savannah,

    Perhaps you and your acquaintance's POTS friend should get together. I bet if you speak with the other POTS patient he/she probably had a period of a few months to a year where she was very sick and possibly bedridden with POTS. Maybe the two of you can educate your friend in common on the sliding scale of POTS symptoms. There are also some journal articles that discuss quality of life for POTS patients: http://www.ncbi.nlm.nih.gov/pubmed/12059122

    If this acquaintance continues to chide you for being sick, even after you have educated this person in a friendly way, they are not worth your time. A friendship that requires you to put more into it than you get out of it, is not worth it.

    POTS is just like any other illness, there are some people who get it really bad, and others who do fairly well. My sister-in-law has MS. Some of her friends are in wheelchairs and have trouble with going to the bathroom. Other MS patients have no noticeable symptoms at all.

    Hope you are feeling well!

    -POTS Grrl