|
| Home > ShakeyAmy.etsy.com > Profile |
|
|
| ShakeyAmy's Profile |
| Bio |
| ShakeyAmy is all about raising awareness about DYSTONIA- everything I make goes toward my medical debt, monthly medications,surgeries,and so on. Everything I make is either for promoting awareness or something about me. I have had dystonia since June of 2005 and all I can say is imagine waking up one day unable to walk,talk, or see. If you don't know what dystonia is- YOU ARE NOT THE ONLY ONE! Which is why there needs to be more people finding out about it and speaking out. Most people it takes years to get a diagnosis and inbetween getting the diagnosis you travel the road of Doctors saying it might be MS,Early Onset Parkinsons,Parkinsons,Epilepsy,Tremors,Myloclonus,and on and on- but none of it is happy - uplifting or relaxing. The journey itself is hard. The mounting medical debt till they test everything on you- and then the treatment (currently there is no cure) is ongoing and unending. If you don't know about DYSTONIA it's time you did. Someone you know could be suffering and you could help them get on track. Having the proper diagnosis is better than not knowing. If you go to my website www.shakeyamy.org there are tons of links to videos,journals,blogs, and current medical research being funded. Often times people get told (because alot of docotrs don't know alot about it) that it is psychogenic. If you talk to the Dystonia Medical Research Foundation only 3% of people have psychogenic dystonia but almost ALL of us get that put in front of us when we hit a wall. What do you do if it is psychogenic? No meds,No treatment, and well quit your job and relax. There is NO denying that stress is a MAJOR factor of dystonia (uncontrolable muscle movement) but usually the stress is from taking so long to get diagnosed while you suffer- going to Dr. after Dr. who say "I don't know" and trying to work dystonia and it's many side effects into daily life. Since becoming an advocate I have had hundreds of emails where people have either given up on finding treatment, decided to except psychogenic and remain homebound and without a voice, and worst yet ALL of the FEMALES I have met get labeled psychogenic (life is just so fast and hard on us grrls you see) but not the MEN. The DMRF told me that it takes a panel and a long time to determine psychogenic and many people are misdiagnosed because, frankly, it is easier to say you are stressing out - relax, then to really be patient and try to find the answer. Dystonia comes in many forms, some genetic testing is available, and some causes have been defined but it is still new ground for science and not alot of neurologists specialize in it. I don't know why I got dystonia- and I can't dwell on that- what I can do is decide that because I will not give up and I will fight for answers and a cure- well that is why I have dystonia. I give a voice to all the people suffering and lost in the process. Join me in breaking the silence. Research and talk about it. Watch the independent film Twisted. Proceeds of the items I make will go to medical bills and 25% of everything I make and sell will go directly to the DMRF for furthering research. I am just one face of dystonia |
| Female, Born on January 18 |
|
| Favorite Materials |
| recycled, cotton, string, paint, stain, wood, foil, pictures, thoughts, outsider, time, film, change |
|
|
|
|
|
|
|
