| Painted Perfection |
| Sure, I think that would be good |
Very Clear with night time Meteor Shower| Clear Springs |
| Autoimmune disorders are a struggle to get diagnosed, too. My sister was "hysterical" until she got diagnosed with Systemic Lupus about 30 years ago. She was 31. |
| Thunderbolt Park |
| Hi guys I'm back I decided to stay up in till 11pm since two horses I know are racing at 11pm |
| Painted Perfection |
| Yeah, I get that. But hey, they can start helping you a lot with PT and pain management. I know thats helped me a lot as well over the last few years. I dont hurt nearly as much. Though I still have lots of bad days |
| Ehlers Danlos Zebra |
| @Luna what do you think about forming a club where the Zebras of HEE can connect? |
| Ehlers Danlos Zebra |
| same!! :) I've also stopped trying to train myself to be as energetic as others. I nap a lot and I'm happy, period :) |
| Ehlers Danlos Zebra |
| yup, that too. So I guess I'll have to wait another year to get in on paper, but oh well. It's already been helping to have an idea as to what could be the root of all those symptoms |
| Painted Perfection |
| My drs gave me the link to the official EDS website to look more into it and do more research on my conditions. It was very enlightening and gave me a sense of im no longer 'crazy' or a hypochondriac about being sick all the time. I have something legit causing all my issues and that I'm not alone. Since then Ive stopped listening to all the people around me who thing Im imagining crap anymore. |
| Painted Perfection |
| Yes. And theyd want to rule out the ithers anyways especially the blood and heart ones because of of how dangerous they are |
| Ehlers Danlos Zebra |
| Yeah I know :( But they still have to rule out the other forms to give a formal hEDS diagnosis, right? |
| Painted Perfection |
| If you have Hypermobility type they wont find it on the genetic tests yet because they still don't know the gene that causes it |
| Painted Perfection |
| I got genetic tested. But I have hEDS so they didnt find it on the genetic test but I scored very high on the beightons test and ive got tons of health issues that are related to having it |
| Ehlers Danlos Zebra |
| I'm on the list for genetic testing next year, but it would explain my entire life lol. It's also why I started playing HEE again, it sparked my interest with genetics |
| Painted Perfection |
| I got my diagnosis a few years ago now. As an adult with it it definitely helped explain a lot |
| Ehlers Danlos Zebra |
| supposedly not, but you're like the 3rd person on here within a couple weeks |
|
| Clear Springs |
| Autoimmune disorders are a struggle to get diagnosed, too. My sister was "hysterical" until she got diagnosed with Systemic Lupus about 30 years ago. She was 31. |
| Thunderbolt Park |
| Hi guys I'm back I decided to stay up in till 11pm since two horses I know are racing at 11pm |
| Painted Perfection |
| Yeah, I get that. But hey, they can start helping you a lot with PT and pain management. I know thats helped me a lot as well over the last few years. I dont hurt nearly as much. Though I still have lots of bad days |
| Ehlers Danlos Zebra |
| @Luna what do you think about forming a club where the Zebras of HEE can connect? |
| Ehlers Danlos Zebra |
| same!! :) I've also stopped trying to train myself to be as energetic as others. I nap a lot and I'm happy, period :) |
| Ehlers Danlos Zebra |
| yup, that too. So I guess I'll have to wait another year to get in on paper, but oh well. It's already been helping to have an idea as to what could be the root of all those symptoms |
| Painted Perfection |
| My drs gave me the link to the official EDS website to look more into it and do more research on my conditions. It was very enlightening and gave me a sense of im no longer 'crazy' or a hypochondriac about being sick all the time. I have something legit causing all my issues and that I'm not alone. Since then Ive stopped listening to all the people around me who thing Im imagining crap anymore. |
| Painted Perfection |
| Yes. And theyd want to rule out the ithers anyways especially the blood and heart ones because of of how dangerous they are |
| Ehlers Danlos Zebra |
| Yeah I know :( But they still have to rule out the other forms to give a formal hEDS diagnosis, right? |
| Painted Perfection |
| If you have Hypermobility type they wont find it on the genetic tests yet because they still don't know the gene that causes it |
| Painted Perfection |
| I got genetic tested. But I have hEDS so they didnt find it on the genetic test but I scored very high on the beightons test and ive got tons of health issues that are related to having it |
| Ehlers Danlos Zebra |
| I'm on the list for genetic testing next year, but it would explain my entire life lol. It's also why I started playing HEE again, it sparked my interest with genetics |
| Painted Perfection |
| I got my diagnosis a few years ago now. As an adult with it it definitely helped explain a lot |
| Ehlers Danlos Zebra |
| supposedly not, but you're like the 3rd person on here within a couple weeks |
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