Global Dysautonomia Awareness…

Hello and Happy Autumn to you all! October is Global Dysautonomia Awareness month! Don’t worry if you didn’t know – this is actually the first ever Global Dysautonomia Awareness month!!  Dysautonomia International, the new worldwide organization whose goal is to raise funds for dysautonomiac research, raise awareness of dysautonomia, and to empower patients and caregivers recently launched its website. Until now, there have only been individual localized groups, so a global organization is a huge step forward.  Check out their website here.  (In the interest of full disclosure, I have a few friends on the Board of Directors). Dysautonomia International declared October as the official dysautonomia awareness month, so let’s celebrate!

In honor of Global Dysautonomia Awareness month, I thought I’d share with you a little summary of my experience with POTS that I submitted for an awareness campaign.

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In the summer of 2004, after I had completed my first year of law school, I did a six-week study abroad program in Prague, Czech Republic. During the program I became sick. I thought it was just a cold, but since have been told that it was probably a virus. It cleared up in a few days and I was able to enjoy the rest of my time in Prague. About a month after I returned to the United States, I became ill with severe stomach pain. I couldn’t keep food down and dwindled from a healthy weight of 132lbs to a frail 108lbs. I saw many doctors and underwent a plethora of tests, but no one could figure out what was wrong. I had to withdraw from law school as I was unable to attend classes.

Finally, after about eight months of pain and frustration, I was diagnosed with gastroparesis. Fortunately, I have a mild case that can be controlled through lifestyle changes and does not require medication. I returned to law school the next year and managed to graduate and pass the California bar examination.

Fast forward to May 17, 2009 when I was spending time with friends at an outdoor festival. I began to feel sick and next thing I knew I had fainted on the street. I was taken to the ER and released with a diagnosis of “dehydration”. However, in the days, weeks (and now years) that followed, I just didn’t feel right. I was dizzy, my heart raced, I had difficulty with balance and suffered from extreme fatigue. I was sent from specialist to specialist who conducted test after test. I was given a diagnosis of iron deficiency anemia, but didn’t feel any better a year later when my ferritin iron level returned to normal. A cardiologist to whom I was referred suspected orthostatic intolerance and ordered a tilt table test in February 2011. The test results led to a diagnosis of postural orthostatic tachycardia syndrome (POTS). Immediately after the test, the cardiologist came in the exam room, told me I had POTS, that I should drink a lot of water, and that I would never be able to have kids. Then he walked out of the room. No other instructions, no follow up appointment, and obviously no bedside manner. That night I went home and cried.

Fortunately, through the DINET website (www.dinet.org) I was able to meet other POTSies in my area who recommended a great cardiologist familiar with POTS, Dr. Thomas Ahern. Dr. Ahern has helped me to feel better, but I still experience symptoms constantly. It is difficult for me to work, but I am single and do not have an alternative source of income. My employer does not provide health insurance, so I pay high monthly premiums for inadequate private insurance, as my preexisting condition makes me expensive to insure. At this point I have only been diagnosed with POTS, but more tests may be forthcoming. I worry about whether it will ever be physically possible for me to stand across from the man I love and say “I do”, whether I will ever be able to support and care for children, whether I will ever be a productive member of society, or just a drain on its resources.    I’m learning to accept my POTS diagnosis, to declare that POTS is what I have, not what I am, but everyday is a challenge.

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I share the above story to show why more awareness is needed. Even my former cardiologist who was familiar with dysautonomia/POTS clearly could have benefited from more information. There is much more to POTS than drinking a lot of water, and while my symptoms could worsen during pregnancy, POTS itself shouldn’t inhibit my ability to bear children.  It is imperative that we increase autonomic research and awareness about dysautonomia to educate patients, caregivers and doctors alike.

Let’s celebrate Dysautonomia Awareness month by sharing information, educating ourselves, and supporting each other. And cake!!

Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree. 
– Martin Luther

Stay tuned.
– L