tag:blogger.com,1999:blog-762508614692449133.post1363101860936407785..comments2023-07-08T04:28:06.855-05:00Comments on A Day In the Life of a Freg: Ehlers DanlosUnknownnoreply@blogger.comBlogger11125tag:blogger.com,1999:blog-762508614692449133.post-34662382442383101852013-02-01T08:28:39.492-06:002013-02-01T08:28:39.492-06:00I have EDS type II or III (waiting on tricare to g...I have EDS type II or III (waiting on tricare to give permission to a have DNA testing. You also have signss of Marfans, and EDS may be a misdiagnosis. Please consider contacting Dr. Dietz at Johns Hopkins Baltimore. He is great about getting back to people on these disorders and is the leading geneticist in the country. He is always willing to help educate doctors and assist in any way he can.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-41419444253566999992010-01-13T16:21:25.162-06:002010-01-13T16:21:25.162-06:00you are so like your mom, just keep going and not ...you are so like your mom, just keep going and not let anything stop you from what needs to be done. It is very inspiring to listen to you on fb and espcially see the reality on this blog. It puts my health issues into perspective. Thanks for sharing. DebbieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-71281672049786178832010-01-12T07:03:37.797-06:002010-01-12T07:03:37.797-06:00Bethany,
Just found your blog, I am sorry as well...Bethany, <br />Just found your blog, I am sorry as well. So much has happened with you since our book club. I miss your smiling face. I hope you are well, and you know you can call me anytime.Angela Nicholsnoreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-15503377545592074242010-01-11T23:03:43.241-06:002010-01-11T23:03:43.241-06:00:( Beth it breaks my heart to think about the pai...:( Beth it breaks my heart to think about the pain you must be in. I'm so sorry you have to battle this every day.Sarahhttps://www.blogger.com/profile/13159669028658651186noreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-39507218302930406072010-01-11T22:39:47.817-06:002010-01-11T22:39:47.817-06:00That just makes me cry to see how bad it is. I lov...That just makes me cry to see how bad it is. I love you, babe. ~ MomAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-53362022569967163462010-01-11T20:51:05.889-06:002010-01-11T20:51:05.889-06:00i usually watch mystery diagnosis before bed,and t...i usually watch mystery diagnosis before bed,and the other night they had someone with EDS on. it made me think of you.Pariahnoreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-77943813730593289302010-01-08T23:17:34.374-06:002010-01-08T23:17:34.374-06:00:( I'm sorry.:( I'm sorry.Osephalahttps://www.blogger.com/profile/16080439489957465230noreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-38543494647532512382010-01-07T22:27:00.305-06:002010-01-07T22:27:00.305-06:00No, there is no cure, it's chromosomal. You ca...No, there is no cure, it's chromosomal. You can maintain, prevent, and strenghten. I managed to restrengthen my legs through intense physical therapy and hardly have issues. My arms have not been able to and will most likely require surgery.Bethany Faye England M.https://www.blogger.com/profile/07544070438056985142noreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-54207709720699036022010-01-07T22:07:58.702-06:002010-01-07T22:07:58.702-06:00Eep, I didn't know what EDS was until you wrot...Eep, I didn't know what EDS was until you wrote this and I googled it but I'm so sorry to see you suffering. :( Is it curable or do you just have to maintain it?Osephalahttps://www.blogger.com/profile/16080439489957465230noreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-24608792646264260392010-01-06T12:17:15.979-06:002010-01-06T12:17:15.979-06:00The kind I have is type 3, or hypermobility. I ma...The kind I have is type 3, or hypermobility. I may also have type 1 or Classical. The only difference between the two is classical can cause heart issues. For type 3 there is no genetic testing, and genetic testing only catches 50% of type 1. It IS hereditary, but it's true hereditary - I can only pass on the kind I have and not one of the more dangerous forms. We're pretty sure Anthony has it, so we're keeping an eye on him and will take precautions in the future so it doesn't get as bad as mine has.Bethany Faye England M.https://www.blogger.com/profile/07544070438056985142noreply@blogger.comtag:blogger.com,1999:blog-762508614692449133.post-23625104556805687702010-01-06T12:13:33.752-06:002010-01-06T12:13:33.752-06:00I think I've asked you these questions before,...I think I've asked you these questions before, but I don't remember. Sorry. What type do you have? Is it hereditary? Will you do genetic testing to see if the kids have it?ChasingCliohttps://www.blogger.com/profile/04475952529466736026noreply@blogger.com