If you're living with a chronic illness, you're in the right place.

Monday, March 31, 2014


I have an almost-3 year-old daughter.  If you've spent any amount of time around a kid this age, you know they LOVE to watch the same movie/show/video over and over.  It's like the concept of saturation is completely missed by this segment of society.  My daughter's current favorite movie is Wall-E.  Remember Wall-E?  It's a really great movie about a little robot whose job it is to clear mountains of trash from a wasted Earth.  Until he falls in love.  If you've seen the movie, you may remember the name of the mega-ship that houses the last remaining humans who fled Earth some 700 years prior.

The Axiom.

An Axiom is "a premise or starting point of reasoning. A self-evident principle or one that is accepted as true without proof as the basis for argument."

Pretty clever, Pixar people.  The humans on the Axiom have found themselves almost mindless blobs who ride around on hover chairs all day, drinking their meals sold to them by Sigourney Weaver's hypnotic ship voice, staring blankly at screens, and talking to each other but not really listening nor engaged with their surroundings.

The truth is many of us fall into the axiom trap.  No, we're not mindless blobs.  But we label ourselves or make predictions that are based on thoughts or statements that can never be proven false.  How often have we used a term or phrase to define ourselves which don't even have real definitions?  (e.g. "No matter what I do, I'm worthless" or "Nobody likes me.")  We don't really know what we're saying when we use terms like these, but it's easy to go there especially if our defenses are down.  And they certainly don't foster positive moods.

Let's look at the axiom in terms of chronic illness thinking.

1.  "No matter what I do, I'm flawed [because I'm sick]."
2.  "It's possible I could have another flare up of symptoms."
3.  "I need to know for sure [that I won't have a flare, that the treatment will work, etc.]"

Consider how each of these statements could be disproved - or not.

1.  If we start with "no matter what" then how can I disprove this?  By saying this, I discount all evidence that indicates that I'm not flawed.  I'm simply saying "I'm flawed and there's nothing you can say that can change my belief."

2.  If I use the word "possible" there's no way to disprove this, since the possibility exists for everyone living with an illness, or those who have yet to develop one.

3.  We all do many things about which we don't know for sure what's going to happen next - yet we still do them.  But the belief of needing to know something for sure cannot be disproved.  It's a preference, a need or want, so there's nothing to prove or disprove.

When thinking about our thinking, it's important to consider the criterion of "falsifiability."  Can we test out the truth of our self-talk?  Science is based on taking statements and testing them against facts.  If our thoughts cannot be tested, then we can never found out what is true and what is false.  From the scientific point of view, such thoughts are pretty useless because they can't be tested.

Yes, science is a cold way to look at things as it strips out emotion from the equation.  My point isn't that we should discount emotions.  Emotions are what make us human.  But when emotions rule our thinking, logic and reason can get pushed out making what we feel be interpreted as what is fact.  We call this emotional reasoning in the psychology world, and it's a major thinking trap.  I believe Stephen Colbert referred to it as "truthiness."

So is there a worry or other negative self-talk that you're experiencing that you can test?  Is it at all possible to disprove these thoughts?  When you make a prediction that something bad will happen, how do you know if you're accurate?

It can be useful to write down some of these thoughts or worries and evaluate how you might be able to test them.  Get a piece of paper, a notebook, your phone and make 2 columns:  column 1 is the thought and column 2 is how you could test it.  If you come up empty a lot of the time in column 2, you might be falling into the Axiom trap.  The good news is we can switch off the auto-pilot by becoming more aware of how we're thinking about things.  Try it out and let us know what you think.

Friday, March 21, 2014

In the Spotlight: Sneddon Syndrome

2:45 PM Posted by Tiffany Taft , ,
Our third entry for our "Rare Disease of the Month" theme for 2014 is Sneddon Syndrome.  I have a friend who is affected by this condition and she inspired me to add this to our list of conditions that we're trying to increase awareness of and knowledge about.  We hope you find this useful.  If you or someone you know lives with Sneddon's, we'd love to hear from you about your experience.

Snapshot:  Sneddon syndrome is a rare disease that affects a person's circulatory system, namely their arteries which are responsible for taking blood away from the heart to all the other parts of the body.  Women tend to be diagnosed more frequently than men, and it usually shows up in the 3rd decade of life.  Sneddon's syndrome was first identified in 1965 and the incidence rate (the number of new cases) is estimated at 4 cases per million people per year in the United States.

What is it?
Sneddon syndrome is a chronic, progressive condition that affects a person's arteries, and subsequently impacts the flow of blood to different parts of the body. The arteries in a person living with Sneddon syndrome deteriorate, which can lead to very small blood clots that can lodge in smaller blood vessels, including in the brain which results in stroke.  Recent research classifies Sneddon's as a systemic disease that can affect any part of the body, although it usually affects the brain.  It is not an autoimmune disease like Lupus, however. Sneddon syndrome is thought to be genetic and a dominant trait, which means if 1 parent carries the gene for Sneddon's the child has a 50% chance of inheriting the gene.  It's important to note that not everyone with the gene will develop the disease.

How Common is it?
Sneddon syndrome is very rare and actual rates in the United States are difficult to find.  We do know that the rates of newly diagnosed cases is around 4 in 1 million per year.  Women are more likely to be affected than men.

What about Diagnosis and Treatment?
Early signs of Sneddon's include a condition called livedo reticularis, which is a mottled pattern on the skin that looks a bit like a purple lace discoloration and is often made worse by cold temperatures.

Livedo Reticularis of the Legs and Feet
Other symptoms include headaches, changes in thinking and memory, seizures, tremors, or Raynaud's syndrome which involves color changes to the hands and feet in response to cold temperatures.  People with Sneddon's often describe "spells" or "episodes" where they feel confused, off-balance, or weak. They may have trouble speaking, have vision problems, or experience tingling sensations in their body.  These spells are not necessarily strokes, but are signs that some impact is happening in the brain.  If the person does have several small strokes that damage the brain, early-onset dementia can occur, in addition to the other potential damaging effects of brain injury.

Sneddon syndrome is difficult to diagnose, and unfortunately many people take many years to receive a definitive answer.  In the past, when Sneddon syndrome was thought to be autoimmune, it was treated by rheumatologists; now that it is better understood, a neurologist is who typically can diagnose the condition accurately.  Experts on Sneddon syndrome are not readily available to most patients, and some must travel hundreds of miles to find a physician who is familiar with the disease.

Unfortunately there is no consensus among doctors as to how to diagnose Sneddon syndrome.  Preliminary blood tests for substances called "antiphospholipid antibodies" have questionable accuracy (many people with Sneddon's do not test positive).  Other tests include skin biopsies and MRI scans of the brain to detect lesions that you wouldn't expect in a person under 50 years of age.  If the diagnosis is unclear, some doctors will give a trial dose of the medication Warfarin or other anticoagulants (medications that break up blood clots) to see if the patient gets better.

Anticoagulants are the main treatment of Sneddon syndrome.  These medications must be closely monitored to ensure the proper dose is being given.  Patients need to be careful of any activity that could cause excessive bleeding since their blood may not clot properly due to their treatment.

What is the Social and Emotional Impact?
When I searched for psychosocial research on Sneddon syndrome I came up with 0 studies.  Unfortunately this is a very under-researched disease, especially when it comes to the social and emotional impact.  So I will do my best to try to discuss this without any research to back it up.  First, based on the potential for stroke and limited physicians and treatments available, it's not far reaching to think living with Sneddon syndrome can be highly anxiety provoking.  Any condition that is poorly understood and that can take years to achieve a diagnosis is going to create intense emotions because of its uncertainty.  We know that people who experience stroke are at increased risk for depression due to the loss of functioning that often occurs.  It's logical to think that those who live with Sneddon syndrome and experience similar losses would also report feeling sad or depressed.  I think the the Sneddon's Foundation website sums it up best with this statement:

"For many patients the combination of this unbearable, unpredictable symptom and the loss of hope for treatment is the greatest difficulty to face with this disease, and the area in which they need the greatest support."

Helpful Resources:

List of Sneddon's Research:  http://sneddonsyndrome.org/medical-research/research/

National Organization for Rare Diseases (NORD) Sneddon Syndrome page (includes information for several agencies dedicated to Sneddon's information and research:  https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1020/viewAbstract

Sunday, March 9, 2014

Seasonal Affective Disorder: Real Thing?

8:34 AM Posted by Tiffany Taft ,
Greetings from the surface of Hoth....I mean Chicago.  We've been busy here this winter breaking records for most days at or below zero degrees (26) and accumulating over 70 inches of snow.  After the 2 previous years being incredibly mild with low snowfalls, this winter was enough to drive the heartiest Chicagoan into a state of partial hibernation.  

How I've been commuting to work.
Seasonal Affective Disorder (SAD) came into the fray in 1984 as a marked change in mood related to seasonal changes, usually associated with winter but not always.  In the most recent iteration of the psychiatric diagnostic manual, DSM-5, SAD is no longer its own diagnosis but has become a qualifier for another mood disorder.  So now anxiety or depression can have a "with seasonal pattern" description.  

Some skepticism exists around the idea of seasonal changes in mood being classified as a disorder, and there are concerns that people will seek unnecessary treatments.  However, SAD can be severe, even leading to suicidal feelings and hospitalizations.  Symptoms include low mood, lack of energy, sleeping too much, social withdrawal, nausea, and overeating in the winter to increased anxiety and irritability, even manic symptoms, in the summer. Symptoms are caused by disruptions to circadian rhythm and/or changes to certain chemicals in the brain like serotonin and melatonin.  So what are the stats?
  • Rates of SAD vary depending on geography, with up to 10% of people in Alaska or New Hampshire but only 1.5% of people in Florida reporting symptoms.
  • Up to 14% of the US population experiences "subsyndromal" SAD, where the symptoms aren't severe enough to significantly affect the person's ability to function.
  • Women are four times more likely to be affected than men.
  • The average age for SAD to start is 23 years old.
  • SAD symptoms usually start around September and continue through March.
  • SAD tends to run in families.
So how is it treated?  The good news is bright light treatment is very effective.  The bad news is up to 69% of people report it to be inconvenient and struggle with doing it consistently.  The ideal light box contains white or green light and the person should sit a few feet in front of it (but not stare at it) for 30-60 minutes a day.  Other non-drug treatments that help are dawn simulators, which light up a person's bedroom gradually over an hour or so, and changing the ionization of the person's bedroom air.  A simple treatment is to simply spend more time outside on sunny days, fully recognizing that mother nature may not cooperate with this one.  These treatments should be given sufficient time to work before giving up on them - around 3 to 4 weeks.

How has your winter been in your neck of the woods?  Has it affected your mood?  Remember, only 3 months until summer!