Stories and Facts

Arboretum, October 11, 2015

·      CFS and related illnesses are growing at an alarming rate for reasons that are unclear.

CFS and dysautonomia are far from rare, despite the fact that so few people have heard of them and so few doctors are equipped to treat them. Very little time is dedicated to these illnesses in medical school. 

I have been alarmed at the number of people I know who have these illnesses. I could spend much of my days helping individuals navigate these illnesses. I now have two neighbors, a college classmate and a high school classmate with POTS. All of them have reached out to me for help as they navigate the early stages of illness. I have also been in contact with three local girls with POTS. It's disheartening to watch them go through the process and see how little has changed since my diagnosis in 1999.

I also have a wonderful group of friends that I met through DINET starting in 2002.

·      There is a significant mismatch between the number of people with these illnesses and the number of doctors to treat them.

For example, Dr. Rowe is unable to take any new patients and has been for several years. Many of my friends with CFS and/or dysautonomia find themselves unable to get adequate care because there simply aren't enough doctors willing to deal with such complicated illnesses that require years of monitoring, time-consuming care, no easy fixes or clear treatments, and lower pay than other specialties.

I am one of the very fortunate ones amongst my circle of friends with these illnesses. 

This is one reason why I am so passionate about raising money to fund Dr. Rowe and his efforts to educate the next generation on the clinical challenges of CFS and the research.  I cannot imagine a better teacher than him. The world needs so many more doctors like him.

·      Most people experience a long delay before finding a specialist.

I did not begin blogging until 2005, shortly after I found Dr. Rowe. While I had seen other specialists, none were able to provide me with the type of care that I needed. Even one of the other top dysautonomia specialists in the country misdiagnosed me with a genetic disorder and told me there was nothing that could be done for me. Previously the only two specialists I could find were one who treated me for CFS and the other for dysautonomia. The cardiologist who originally diagnosed the dysautonomia told me: "On a scale from A to Z, you are a Z. I have never treated someone who is a Z and I don't know what do to for you."

I have said many times that I saw almost 100 doctors before I found Dr. Rowe. These doctors were in every specialty imaginable because I didn't have someone to integrate all of my symptoms until I met Dr. Rowe. 

I waited SIX years to find a specialist.

Had I found a specialist more knowledgable in dysautonomia more quickly, I would likely have had a much greater chance at healing. Those who are diagnosed within the first 1-2 years and are able to start the appropriate treatments, such as midodrine, florinef and beta blockers experience a higher rate of recovery.

When intervention occurs early, the medications support the body in the ways that it needs until it can begin to heal itself. The longer the delay in receiving treatment, the more difficult it is for the body to heal.

I had access to care that most people do not--I had the physical and financial support to travel to the doctors I wanted to see and I had the scientific skill to navigate complicated medical articles to help me find a diagnosis. 

And it still took SIX years.

 Idon't want another group of young people, mostly women, to miss out on so much of their lives because we have limited treatment options and very few doctors.

Be a dancing light,

Emily