Here is Treacy’s story. I only met here a few weeks ago and it was because of her tireless efforts to promote the petition. I noticed on her twitter bio that she had paroxysmal dystonia and I thought, she sounds like me!! After seeing some of her videos I was even more convinced. She has worked so very hard to promote this petition we all need so badly. I am so glad she was willing to let me share her story!

Hi, my name is Treacy and I have generalized paroxysmal dystonia. My symptoms started when I was 16 with a tremor in my right hand. About a year later I started having dystonic storms. What is a dystonia storm? Picture a grand mal seizure. My hands curl, my feet curl, my head thrashes back and forth and right and left, my back arches, my stomach spasms, my eyes roll back in my head, the left side of my face twitches, my arms and legs flail, my eyelids close, my throat tightens. This often goes on for hours and the whole time I am completely aware of everything. I first time I told my doctor about these episodes, he said, and I quote, “I wouldn’t worry about it.” He did not run any tests, he didn’t give me any explanation for what might be causing it, he just said, I wouldn’t worry about it.

Twelve long years elapsed between the time my dystonia started and the time I was diagnosed. During those years I saw countless doctors. Some of them recognized something was seriously wrong but didn’t know what or how to help me, most of them though told me I must be faking. When the first doctor told me I was school phobic, I was sympathetic. I thought they must see a lot of people who are school phobic and simply made the wrong diagnosis. Then I researched school phobia and found symptoms disappear on the weekends and during the summer. I had seen this doctor in July. It was at that point I realized the doctor hadn’t made an honest mistake but rather had been unwilling to admit he didn’t know. This would be the first of many ridiculous diagnoses, including, I was upset I didn’t have a boyfriend, and I was upset I was an only child.

In fairness, my form of dystonia is very rare but, in the end, all it took to be diagnosed was a doctor who believed my symptoms were real and said I don’t know what this is so I am going to research it. We need more doctors like this! We also need more dystonia awareness because that truth of the matter is most people are diagnosed by a doctor who knows what dystonia is. We are currently petitioning the White House to officially recognize September as dystonia awareness month. Please help us in our efforts. We need 100,000 signatures by September 30th. It just takes 2 minutes to sign and verify. No one should have to wait years to be diagnosed.

Just click on the link below!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz