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Ehlers-Danlos Syndrome Online Support Group

Anyone out there (vascular)


#1

Anyone out there??

Posted by amurph on August 10, 2015 at 11:31am

Hi everyone, I’m a 16 year old girl from Ireland with EDS Vascular type and I would love to talk to someone with EDS Vasucular Type (Preferably close to my age) because I don’t know anyone else who has EDS, and nobody else understands what it’s really like to have EDS, especially Vasucular Type. It would be amazing to actually meet someone with it, because as you all know EDS is not the nicest thing to have, and it would just be so nice to talk to someone who can actually relate to me! Thanks! Also I don’t know how this website works, can you send people, messages? :slight_smile:

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Replies

Zebra ·February 28, 2016 at 2:13am

Wrong age and wrong EDS, too old nearly 40 so ancient, and got HEDS with PoTS, but love to have some one to chat with. Get stuck in door a lot due to above so may know how you feel. Is anyone in you family aware they have it, or are you first to be diagnosed. No one in my family had heard of it, or is affected as bad, just odd bendy joints etc. So, felt alone when it first happened, but atleast they are now aware what to look out for in future generations. The reason im also posting to you, is my son is 12 so fairly close in age to you, he only has minor hypermobile joints. Fingers crossed it stays that way. But he has grown up seeing the affects of EDS. Anyway, all the best.

amurph ·January 7, 2016 at 9:37am

Hey Seenie! Sorry it took me so long to get back to you! I’d love to be introduced to other people, thank you!

ModSupport ·November 7, 2015 at 6:31pm

Hi again, amurph! The ModSupport comment below came from TJ. This is Seenie. We both do ModSupport (we help out in any way that we can around here) and we share a log in. I’d love to introduce you to Ranger, and I’ll get back to you on that. Check in with us soon … it’s been too long.

ModSupport ·November 7, 2015 at 9:39am

One nice thing about the internet is it defies age… The vascular type is rare and of course the most serious and is the real deal. You can learn a lot from some of the folks here and if nothing else surviving and thriving with a rare chronic disease.

To message between folks, just send them a friend request. once they accept it you can use the message feature with them Maybe Seenie can introduce you to Ranger. She is another of our communities but would be a great friend for you.

Moderator

Michaela ·November 7, 2015 at 9:29am

Hi Kalo! I’m 25 now but your story is similar to mine. I was lucky and got diagnosed when I was 15 after my mom was diagnosed but we didn’t understand what it meant. I also had severe problems with my knees and have had multiple surgeries. I even lost the ability to walk for a while. Since I was 17 my life has just been all down hill from there with problem after problem. I hope that you have a good support system. That’s really what we need more than anything when trying to get through all this. Also totally feel free to drop me a message any time if you want to talk.

kalo1608 ·November 7, 2015 at 6:05am

Hi! My name is Kara and I am 21 years old and I was just diagnosed with EDS. I have struggled all my life with EDS symptoms…ever since I was a young kid I’ve had chronic joint pain and orthopedic issues. I also just thought my hyper flexibility and double joints weren’t anything abnormal…just unique! My vision is terrible, I have a hard time sleeping at night and lately I’ve just been really sad a lot. My hands, feet, arms and legs turn purple and become very painful quite often…especially when I am outside. Being diagnosed with EDS has almost been a blessing because for all these years I thought all of my symptoms were “normal”. At 16 I can remember waking up every morning with severe joint paint and just thinking it was a normal part of life. During my teenage years I suffered from a lot of knee injuries and I kept going to my local orthopedist and he would never believe me and misdiagnosed me for years. When I went off to college I kept having the same injuries so I went to a doctor in Syracuse, NY and they caught my torn meniscus that had been torn all along. To make a long story short I’ve now underwent 4 knee surgeries with 3 more coming up. Recently, I had an MRI on my shoulder after a simple fall while playing soccer and the results shocked my doctors, and that is how I was first clinically diagnosed with EDS. I had easily torn my rotator cuff and labrum which I will have surgery for in the near future. It’s unfortunate that these symptoms I have are debilitating at times, but I am relieved to know that there are young people just like me who struggle with the same problem!

ModSupport ·September 1, 2015 at 11:17am

Things have been very quiet around here, amurph, but now that the summer hols are over, I think you’ll find that you have more company. Have you checked the members list to see if there’s anybody near you, or your age?
I don’t have EDS, so I cannot relate to exactly what you are going through, but I have another painful and chronic disease, Psoriatic Arthritis. Pain and chronic I definitely relate to! Thank goodness for the internet so that we can support each other.
Seenie

Kara Burrus ·August 11, 2015 at 8:37pm

Hi, have eds vascular type too. I live in america and altbough I’m quite a bit older than you, I was diagnosed at a young age. I can relate . The vascular type is quite rare and I haven’t met anyone yet with it besides you.