Antisynthetase Syndrome - Dr. Lisa Christopher-Stine, TMA conference
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- Опубликовано: 13 дек 2024
- The Myositis Association presents this session from the 2016 Annual Patient Conference. DM and PM patients share this syndrome, and knowing about it may help you anticipate what's ahead, give your doctor some insight into your disease, and make sure you receive proper treatment.
I've been sick with this condition for the last 6 years. Very annoying.
Hi Red Shark, I also have ASS. If you haven't joined yet, the Antisynthetase Syndrome Support Group on facebook is a brilliant networking group for support and sharing information. Couldn't imagine being an ASS without it!
facebook.com/groups/AntisynthetaseSyndromeSupportGroup/
There's a book by J King which for me did a great bit of light. It's called Bits and Pieces you've might've missed about your Antisynthetase Syndrome. I read it online, an eBook.
I was diagnosed in 2012 with anti synthetase syndrome i d l pulmonary hypertension and I have trouble writing with my dominant hand I live in Lawton Oklahoma and I am a veteran but I'm not really happy with the VA how can I get better treatment from an expert on these issues
I'm not an expert. but as said above, took me years to get something out of the doctors and in the end I arrived to pills for nerves. It's a bit of an unknown territory, everything related to the nervous system is. Because it's about behaviours. My doctors today in the UK don't take much into consideration habits and behaviour, they go directly to the fast lane to pills. Let's try this let's try that until something works. Like an experiment. There's an eBook tho by J King which for me did a great bit of light. It's called Bits and Pieces you've might've missed about your Antisynthetase Syndrome. Hope that helps.
I’m so confused on antisynthitase syndrome! Is it all of the myositis? It looks like it is associated with polymyositis, Dermatomyositis, IBM, ect. So I don’t get what it is exactly. It sounds like whatever it is that all of these happen with it! I don’t know how to explain my confusion. I just really don’t get it. Especially because you talked about several types of myositis. So what is Anyisynthetase syndrome? Thank you!
Took me years to get something out of the doctors and in the end I arrived to pills for nerves. It's a bit of an unknown territory, everything related to the nervous system is. Because it's about behaviours. Doctors today don't take much into consideration habits and behaviour, there's the fast lane directly to pills. There's an eBook by J King which for me did a great bit of light. It's called Bits and Pieces you've might've missed about your Antisynthetase Syndrome. Hope that helps.
@@pacipano5014 I’m trying to understand the exact difference between anti synth tase and other myositis. What makes it different? Thanks
I’ll watch it again now that I learned more it might makes more sense now.
I see now it looks like it is the autoantibodies that you have! Is that what makes it antisynthetase ?
@@heatherr1141 I observed with mine there a relation with my moods. So when I came across this book, I felt like at home. The way I read and I feel it and understand it from my experiences with all the doctors I met, but especially from the first two, the autoimmune element is the same for all autoimmune conditions, when a person is turned against own person, the immune system turns against own body. This is what I believe. The book shows 7 groups of behaviours. There are many autoimmune diseases and the difference stays in a variation of a subgroup of those behaviours. So all I'm talking about is a psychological approach to it, a spiritual one, behavioural one. Not sure if this is what you were looking for. So antisynthetase hits the lung it's because, already having the autoimmune element by those bad behaviours, the person has an inclination for depression, grief, fear of taking in life, not feeling worthy of living life fully, thus the ability to take in life, which is representative for the lungs, while the second group you ask about hits more the muscles and skin, and their sensitivity is related with others weaknesses let's say in behaviours. This is the approach that works for me, with the purely biological one I asked the experts and when I went deep with them it was like a dog running after his tale. But that's not the reason I went for this psychological change, but because it makes sense and it works. Changed my life, which is actually the solution too, completely change the life, together of course with detox, fasting, exercise, but especially an introspection of thoughts, the source of ...everything. Every bad thought has a bad strain in the body, that's the principle basically. Hope it makes sense. Best
Does anyone know if it is possible for men to still have a healthy child.if u have the synthetase syndrome
I'm not an expert, but from more than 15 years with the disease I can surely tell there's a behavioural element to it. So if you don't pass that behaviour through education and your daily state of mind, the kids would not have the problem. Maybe the inclination to that behaviour, if you gonna still have it in you, but I don't think that's the focus point. Again, I'm not an expert. There's an eBook by J King which for me did a great bit of light. It's called Bits and Pieces you've might've missed about your Antisynthetase Syndrome. And it talks about this psychological element. All departs from the nervous system. A person turned against oneself will have the autoimmune element activated. The immune system turns against own person. In my case it is clearly that way. But took exterior sources to realise it, as it was so natural for me to be like that, and that was wrong. And once the autoimmune element is activated, from my understanding from more than 15 main big doctors this period with my disease, the disease gets the area that's already more sensitive in the body. Most probably from another pattern of behaviours, of strains in the body, if that makes sense. For example in our case the book says lung can get more sensitive from Depression. Grief. Fear of taking in life. Not feeling worthy of living life fully. But the autoimmune element is from other 7 behaviours. Is a very strong and succinct read. I found it life-changing.
Heey I saw your comments and you come across as someone who knows some things about this: my dad just go diagnosed with anti synthetase syndrome. Does this mean I need to get tested if I am carrying the gene too?
I was wondering can secondhand smoke be a factor I grew up with both parents smoking cigarettes and then my sister just wondering and also what about all the vaccines that we were made to take
I asked myself the same question, and my doctors too, and they said it could've make my lungs sensitive, but the autoimmune element is not activated because of that. There's an eBook by J King which for me did a great bit of light. It's called Bits and Pieces you've might've missed about your Antisynthetase Syndrome. Good luck!