By Sharon on Thursday, October 19, 2000 - 11:07 pm:

Hi I have just found this site and found out at the age of about 20 that I was Hypermobile (I am 29 now) and Live in Australia. I seem to be the only person in my family that suffers from Hypermobility and so far have injured the ligaments in my SIJ(hip) had 1 knee reconstructed twice due to restretching the 1st graft,have a chronically subluxing right shoulder and have just torn s few of ther ligaments in my right writs or so they think and just tomake my life more fun I have been diagnosed with Reflex Sympathetic Dystrophy for the last 5 years which is a chronic pain syndrome involving the sympathetic nerves. I always just thought that everyone was flexible and could do what I can and I have never actually met another person who is hypermobile. When I tell doctors that I am Hypermobile they just sort of say yeah so what, but I can see that it could be the case of more of my problems that I thought. I also am HLA B27+ which acordign to the doctors makes me an achey person.
Please contact me as i would love to hear from others

By Rob on Friday, October 20, 2000 - 05:00 am:

Hello Sharon:
My name is Rob and I live in the United States, and like you I have EDS Type III Hypermobility which causes all of the major and minor joints to sublux at will. I am now presently on short term disability and applying for Social Security Disability within the next week.
I was tested in late Aug.1999,and since I have inflamatory Arth of left wrist, Burstits of both hips and knees. With my employment I am walking 8 to 10 hours per day carrying 16 pounds of equip- ment,the walking and equipment has greatly in-
creased the condition and now I'm faced with years of pain,discomfort and an early retirement I'm only 40 years old and feel on certain days that I'm 70 or 80 years old.

You might want to look at the following web-site that I found that have been a great help to me and others in the United States, it's one of the national foundations on EDS.,the site is: www.ednf.org

In closing, I hope to hear from you in the near furture and good luck. I know that from where I stand that any type of corrective surgeries will not help due in part that the conncective tisues will only return to the orginial length, that is the main reason that I haven't looked at any type of surgeries, the cost pain and recovery is not worth it with the fact that my doctors and I know that the lasting effects will not help me in the end.

Take care and good luck.

Sincerly,

Rob.

By Kimberly on Friday, October 20, 2000 - 09:16 am:

Hey Sharon, how did they test to see if you were HLA B27+? I have never heard of this. I seriously doubt you are an achy person. Well ok you are but it's because you have HMS!!
One big hug from me,
Kimberly

By Sharon on Tuesday, October 24, 2000 - 11:23 pm:

Hi Kimberly
I was tested for HLA B27+ by blood test and it was explained to me as making me an achy person (I was about 12 years old aand also tested positive to Juvinille Rheaumatoid Athritus) and I don't know very much about it. I am still trying to find out more about it but I think that it stands for Human Leucocyte Antigen type B27 and that it is a part of my cellular make-up and there is nothing that I can do about it. Sharon

By Barbara on Sunday, January 14, 2001 - 07:12 pm:

Sharon,

There is an email support group for Australians with EDS. Just visit http://www.egroups.com/group/Aus-EDS to sign up.

By Kim on Saturday, March 16, 2002 - 01:41 pm:

Rob,
I am also a type three eds. patient.I was diagnosed sixteen years ago, after surgery, unfortunatly..I had a left shoulder fusion three years ago because things had gotten so bad.It was the worst and best thing I had ever done. I woke up from surgery thinking what the heck have I done... Three wks. later it still sucked but it was actually better..Three years now and its great.I needed something to be done, living in an emobiliser wasnt it. I have made ajustments in my lifestyle that allow for me to have bad days if I need them. It sucks, but dont let it define who you are.. Best, Kim