Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Welcome Pam. You will find every one here will become your " family " rather than a group. Blessings. Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Hello, My name is Pam and I am 41 years old with 2 children ages 5 and 7. About 2 years ago we were all diagnosed by a geneticist with EDS type III - hypermobility. Dislocations are a real problem. I've had to leave work due to frequent injuries and chronic pain. I have been considered permanantly disabled and am now on Social Security. My children are limited in physical activities and are in various therapy programs in and outside of school. Since our diagnosis, I've been doing what I can to understand the disorder. I have a very supportive rheumatologist and primary for myself, a very conciencious pediatrician, an OT and speech therapist who support all my efforts for the children, and even an equine (horse) therapy program who work with the kids weekly free of charge. My husband is also very supportive. I have been following this site for almost the same amount of time reading the postings and learning what I can from you all. What I haven't been able to find is someone to talk to who understands what we're going through. I'm so tired of being the supporter and the educator (I know how very important this is though). I do not have any support on a personal level and I have been unable to find a support group in the area. I am very frightened for my children and would welcome some first hand knowlege from someone who understands what it may be like to live in a day of the life of.... Thanks, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Hi Pam, Welcome to the CEDA family. My name is . My sons ages 7 and 10 and I have been diagnosed with hypermobile EDS. This supportive group should be just what you are looking to vent, ask questions or just chat about the " stuff " we deal with each day. I look forward to getting to know you better. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2004 Report Share Posted February 15, 2004 Hi Pam, My name is Ginley. I am 38 yrs old and I and two of my children have EDS too. I now what it is like to feel sick and in pain yourself and have your children suffering also. You are in the right place here on the CEDA list with many who are going thorugh what you are going through. Hang in there and take care. Hugs, Sue Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi Pam! Welcome to our family! I think you will find the support you need here, as we ARE all one big family! The people here are so knowledgeable and so very supportive! I don't know what I would do without them! My name is Lana, and I'm 53 and have HEDS. I have two grown children, a son (29 and single) and a daughter (26, married, no children yet) who both have HEDS. My daughter showed some symptoms in high school, but mainly after she married, and my son has just recently had some problems with his knees. Neither seem to be as bad as me yet, thank God! I don't know if or what your specific questions may be, but please know that ANY of us are here for you, ANYTIME, for ANY REASON! You may write me on list, or off list, if you prefer. If you wish to write offlist, just let me know, and I will send you my email address. I would be glad to be of any support to you and your children, Pam! You have only to ask! Welcome, and I hope to hear from you soon! Love Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi Pam -- I'm Patti Melcher and I have EDS also. Welcome to the group. We have a lot of wonderful people here and it is very comforting to know there are others who understand. Take care and I hope you are well. Welcome again, Patti n more about EDS, visit our website: http://www.ceda.ca ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi Pam, I'm Cindy C. I'm 50, my youngest of 5 boys has HEDS. He is 16. Did I understand that you've been reading the list for two years, and are just now coming out? We could have been here supporting you all this time. Most everyone here has people they seem like kin to and write off list daily. There are folks here that have kids your age, and can let you know how they handle the " live in a day of the life of.... By reading your post, I'm guessing that is your first question. For me, the day is different that probably for you. Since you've been reading for some time, I assume you already know what some of us are going through. My son, Dylan sends most of his day in his room. He can walk very little and pain is his constant companion. I bring all his meals and meds to him, his only outings now are Dr appointments. This is not at all a normal situation for EDS children. He just got hit harder by it than most. I have no problem telling you how the day is for him or I, but I suspect our day is different than yours. Just let me know if you want to talk, and we can write or I can call if you want some one to talk to. (never give your phone # on the board). Keep the questions coming. Cindy C. New to EDS Hello, My name is Pam and I am 41 years old with 2 children ages 5 and 7. About 2 years ago we were all diagnosed by a geneticist with EDS type III - hypermobility. Dislocations are a real problem. I've had to leave work due to frequent injuries and chronic pain. I have been considered permanantly disabled and am now on Social Security. My children are limited in physical activities and are in various therapy programs in and outside of school. Since our diagnosis, I've been doing what I can to understand the disorder. I have a very supportive rheumatologist and primary for myself, a very conciencious pediatrician, an OT and speech therapist who support all my efforts for the children, and even an equine (horse) therapy program who work with the kids weekly free of charge. My husband is also very supportive. I have been following this site for almost the same amount of time reading the postings and learning what I can from you all. What I haven't been able to find is someone to talk to who understands what we're going through. I'm so tired of being the supporter and the educator (I know how very important this is though). I do not have any support on a personal level and I have been unable to find a support group in the area. I am very frightened for my children and would welcome some first hand knowlege from someone who understands what it may be like to live in a day of the life of.... Thanks, Pam To learn more about EDS, visit our website: http://www.ceda.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi again, I guess I didn't introduce myself properly before. My name is Byrnes. I'm 41, and have 3 children, - 17, - 15, and - 13, who all show signs of EDS. I have had chronic joint and muscle pain for 11 years, and so many strange health problems, I couldn't list them here. My 2 daughters show more symptoms than my son. My oldest, , has had 3 spontaneous pneumothoraxes since last may, chronic UTI's, migraines, and many other weird health problems. She can't get numb at the dentist, and the epidural she got for her lung surgery didn't work. My daughter has chronic knee, calf and ankle pain, terrible muscles spasms and terrible stretch marks. My son has GERD, and on and off joint pain. We are all hypermobile. We all have Raynaud's. blah, blah, blah........... it goes on and on. In the last year and a half, we haven't gone a week without someone suffering from something. If I told you everything, you'd think I was a compulsive liar. We haven't been dx'd yet, but we are seeing Dr Byers tomorrow. So, I see you have already gotten many responses. Please let us know how you are doing, and if you need to talk about ANYTHING, the people here will listen, and they care. It's been great for me. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi Pam, My name is son and a very warm welcome to our wonderful group. I promise you you will have all kinds of personal support from this group. I just joined myself a few montha ago, and it's been one of the best things I've ever done in my life. I've met so so many nice and supportive people in this group. We all have and share the same unfortunate EDS bond. But together this group is just absolutely fantastic despite our disease. Again Welcome! Sincerely, S. New to EDS > Hello, > > My name is Pam and I am 41 years old with 2 children ages 5 and 7. > About 2 years ago we were all diagnosed by a geneticist with EDS > type III - hypermobility. Dislocations are a real problem. I've > had to leave work due to frequent injuries and chronic pain. I have > been considered permanantly disabled and am now on Social Security. > My children are limited in physical activities and are in various > therapy programs in and outside of school. > > Since our diagnosis, I've been doing what I can to understand the > disorder. I have a very supportive rheumatologist and primary for > myself, a very conciencious pediatrician, an OT and speech therapist > who support all my efforts for the children, and even an equine > (horse) therapy program who work with the kids weekly free of > charge. My husband is also very supportive. > > I have been following this site for almost the same amount of time > reading the postings and learning what I can from you all. What I > haven't been able to find is someone to talk to who understands what > we're going through. I'm so tired of being the supporter and the > educator (I know how very important this is though). I do not have > any support on a personal level and I have been unable to find a > support group in the area. I am very frightened for my children and > would welcome some first hand knowlege from someone who understands > what it may be like to live in a day of the life of.... > > Thanks, > Pam > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Pam Welcome to the group. I am a realtively new addition (5 months or so), but I have found it be hugely helpful & supportive. I have been diagnosed with VEDS (Vascular ) . I don't have any joint issues but am always ready to lend an ear as everybody else does. Its good to have alot of support i.e.- doctors, family but here you will find people that do experience the same kinds of things you are, therefore we have a better understanding than some. I am closer to 46 than 45 but so far haven't had any real medical problems. I had been diagnosed by a genetecist due to the fact that we lost our 13 year old son almost 9 months ago.SO they were looking into the whys?? and decided to test me as we shared some of the same characteristics. They are still doing further testing (Dr. Byers in Seattle) and we have yet to hear the final word. We are from Calgary Alberta ...where are you from. As you can see the list is from all over the world. Take Care Betty New to EDS > Hello, > > My name is Pam and I am 41 years old with 2 children ages 5 and 7. > About 2 years ago we were all diagnosed by a geneticist with EDS > type III - hypermobility. Dislocations are a real problem. I've > had to leave work due to frequent injuries and chronic pain. I have > been considered permanantly disabled and am now on Social Security. > My children are limited in physical activities and are in various > therapy programs in and outside of school. > > Since our diagnosis, I've been doing what I can to understand the > disorder. I have a very supportive rheumatologist and primary for > myself, a very conciencious pediatrician, an OT and speech therapist > who support all my efforts for the children, and even an equine > (horse) therapy program who work with the kids weekly free of > charge. My husband is also very supportive. > > I have been following this site for almost the same amount of time > reading the postings and learning what I can from you all. What I > haven't been able to find is someone to talk to who understands what > we're going through. I'm so tired of being the supporter and the > educator (I know how very important this is though). I do not have > any support on a personal level and I have been unable to find a > support group in the area. I am very frightened for my children and > would welcome some first hand knowlege from someone who understands > what it may be like to live in a day of the life of.... > > Thanks, > Pam > > > > > To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 Hi , Hasn't this list been a fantastic place to come when you haven't got a diagnosis yet? Back in 1997, I was diagnosed after getting a lot of answers and support here... Good luck on your appointment with dr Byers tomorrow!!! Aase Marit (Norway) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 In a message dated 2/16/04 12:49:48 PM Eastern Standard Time, monica-jb@... writes: << If I told you everything, you'd think I was a compulsive liar. >> he, he, he, sure sounds like EDS to me....... Quote Link to comment Share on other sites More sharing options...
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