Lindsay
As I mentioned in a previous post, October is Dysautonomia Awareness month! Turquoise is the official color of dysaytonomia, and last weekend I had the opportunity to attend a local celebration where they lit up the lights of our city’s Convention Center in turquoise to raise awareness for dysautonomia. I was surprised at how many people showed up. Many are friends I have known since I was first diagnosed, but many were new faces.
As you might remember, dysautonomia is an umbrella term used to refer to a malfunction of the autonomic nervous system (ANS). The ANS controls all of those automatic functions you don’t have to think about, like heart rate and blood pressure, temperature, respiration, perspiration, and digestion. Many conditions fall under the term “dysautonomia”, including postural orthostatic tachycardia syndrome (POTS, which I have), Pure Autonomic Failure (PAF), Multiple System Atrophy (MSA), and even Parkinson’s (of which my mom has a rare form). Some forms of dysautonomia are reversible, some are chronic, and some are fatal.
When you stand up, gravity pulls blood towards your feet. In the average person, the ANS causes the veins to constrict and the heart rate to increase by approximately 10 beats per minute (bpm), forcing blood back to the heart and brain. In a person with POTS, the automatic anti-gravity mechanism doesn’t work correctly. Our veins don’t constrict like they should, and blood pools in our legs. Our heart rate and catecholamine (hormones such as epinephrine and norepinephrine) increase to try to compensate for the restricted blood flow. This results in an uncomfortably fast heart rate, and often a sense of adrenaline or anxiety while standing. The reduced blood flow also results in lightheadedness and dizziness. However, POTS causes a number of other symptoms as well, including:
- palpitations
- syncope (fainting) or presyncope
- fatigue
- nausea/stomach pain
- headaches/migraines
- exercise intolerance
- neuropathic pain
- blood pooling
- light sensitivity
- anxiety
- tremulousness (shakiness)
- chest pain
- shortness of breath
- cognitive impairment
- low blood volume
I experience all of the above, but fortunately not usually all at the same time.
Approximately 1 in 100 teens has POTS. If you have kids, especially if you have girls, you should know about POTS. Statistically, it’s likely that someone your daughter knows will have POTS. It is estimated that between 450,000 and 1 million adults in America have POTS.
Because I sit on the Board for an organization dedicated to raising awareness and funding research for POTS, I have created some graphics and Facebook frames that can be shared online. Check out our Facebook page for graphics!
“Our job isn’t to fight fate, but to help each other through. Not as soldiers but as shepherds. That’s how we make it OK, even when it’s not. By saying it out loud, by helping each other through” – Lucy Kalanithi
Smell ya later.
– Linds
You are so lucky you have events like that in your country. But what do we do where there is no charity in your country? Do you know how the lighting of the convention centre was organised. I would love if there was an event like this in Australia where other patients could all get together and meet each other as I have never met anyone in person or in my country living with POTS or Dysautonomia.
The charity for which I sit on the Board was started by a woman whose daughter has POTS. She wanted to make a difference, so she started an organization.
A woman with POTS that lives in my city contacted the Convention Center and arranged for the lights to be lit up blue. Apparently there are a lot of buildings here in the US that will light up different colors to support charities. She made a couple of calls and arranged for it, then she planned an event around it. It was quite impressive.
Have you looked online to see if there is a Facebook group dedicated to dysautonomia where you live? A woman I know started our California POTS facebook group many years ago, and over time it has built to thousands of members. Occasionally we have get togethers and meet in person. It takes time build it up, but I bet there are other people near you also looking to meet.
There are about 3 organisations in America and they all do similar things. We have none in Australia as it’s not easy to set up a charity. There is one in Australia but I don’t really like it and the people in it don’t really seem to want to meet up in person. It’s all only on the online world. Nobody in Australia seems to want to take action. I will try and organise a lighting for next year. It definitely takes time to build it up but hopefully if I plan a year in advance we will be able to have something like this in Australia since there is no community. For now i am trying to raise as much awareness as i can through my new website all-hearts.org and my blog.
It would be great to also get the effort out to have Social Security recognize this as a disabling, no wait for benefits, illness. Call the number at 1-800-772-1213 and let them know!
Yes! Thank you for sharing!
Such a brilliant post to raise awareness and bring to light the possible symptoms so clearly, too. Keep rockin’ at what you’re doing Lindsay – it’s still a far lesser known condition but it’s bloggers like you that help others who may be suffering with the symptoms, be newly diagnosed, struggling for support, society in general to change attitudes.xx