Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Laurie, I have a SIL diagnosed with pseudoxanthoma elasticum and I was curious if you know how that related to Ehler Danlos Syndrome. Do you know of anyone else with that diagnosis AND a diagnosis of mito? Maggie > > As for challenges, our family has Ehler Danlos syndrome with various > symptoms, the allergies and then the mito. We get by with lots of laughter > and acceptance. > > laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Maggie I am not familiar with your diagnosis, but breaking down the words, it appears that it might be similar to Ehler Danlos Syndrome. My younger son is most affected in our family. He can stretch his skin - skin on face can be stretched about 3-4 inches. His joins are very loose. He has had multiple surgeries as a result of the unstable joins. He can bend many of his joins so that the dislocate and then they return to normal. It is thought that our family may have MIDS. There is a relationship between dysautonomia and Ehler Danlos - higher percentage of those with dysautonomia having Ehler Danlos. I have asked Dr. Boles (identified and doing research on MIDS) about relationship to mito. It doesn't think there is a relationship, but I have heard of others with mito having it. It could be that those with mito are just more turned in than some folks. The rest of us in the family have some of the features of Ehler Danlos, but not to the extend my son has. If it were not for him, we would probably never be aware of it. I guess I didn't give you much of an answer - I just don't know. laurie > > Reply-To: > Date: Tue, 11 May 2004 03:46:13 -0000 > To: > Subject: Ehler Danlos, Laurie > > Laurie, > I have a SIL diagnosed with pseudoxanthoma elasticum and I was > curious if you know how that related to Ehler Danlos Syndrome. Do > you know of anyone else with that diagnosis AND a diagnosis of mito? > > Maggie > >> >> As for challenges, our family has Ehler Danlos syndrome with > various >> symptoms, the allergies and then the mito. We get by with lots of > laughter >> and acceptance. >> >> laurie >> > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Thank you Laurie, It is actually not my diagnosis, but a family member (by marriage). Thought this was pretty uncommon and I found it interesting that you had a similiar disorder. (difficult for me to tell the difference by reading the symptoms). She also has a lot of energy and pain related problems (diagnosed as fibro). Unfortunately she is also losing her vision due to macular degeneration, and can't do a lot of research. Just thought I might have been able to find a source of info for her. Thanks for sharing. It's very interesting. Maggie > Maggie > > I am not familiar with your diagnosis, but breaking down the words, it > appears that it might be similar to Ehler Danlos Syndrome. My younger son is > most affected in our family. He can stretch his skin - skin on face can be > stretched about 3-4 inches. His joins are very loose. He has had multiple > surgeries as a result of the unstable joins. He can bend many of his joins > so that the dislocate and then they return to normal. It is thought that our > family may have MIDS. There is a relationship between dysautonomia and Ehler > Danlos - higher percentage of those with dysautonomia having Ehler Danlos. I > have asked Dr. Boles (identified and doing research on MIDS) about > relationship to mito. It doesn't think there is a relationship, but I have > heard of others with mito having it. It could be that those with mito are > just more turned in than some folks. The rest of us in the family have some > of the features of Ehler Danlos, but not to the extend my son has. If it > were not for him, we would probably never be aware of it. > > I guess I didn't give you much of an answer - I just don't know. > > laurie > > > From: " whoewe2002 " > > Reply-To: > > Date: Tue, 11 May 2004 03:46:13 -0000 > > To: > > Subject: Ehler Danlos, Laurie > > > > Laurie, > > I have a SIL diagnosed with pseudoxanthoma elasticum and I was > > curious if you know how that related to Ehler Danlos Syndrome. Do > > you know of anyone else with that diagnosis AND a diagnosis of mito? > > > > Maggie > > > >> > >> As for challenges, our family has Ehler Danlos syndrome with > > various > >> symptoms, the allergies and then the mito. We get by with lots of > > laughter > >> and acceptance. > >> > >> laurie > >> > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Maggie Once I find my book on syndromes, I will look it up. There are several types of Ehuler Danlos, so her diagnosis might just be a more specific name for the type she has. Maggie > > Reply-To: > Date: Tue, 11 May 2004 07:13:16 -0000 > To: > Subject: Re: Ehler Danlos, Laurie > > Thank you Laurie, > It is actually not my diagnosis, but a family member (by marriage). > Thought this was pretty uncommon and I found it interesting that you > had a similiar disorder. (difficult for me to tell the difference > by reading the symptoms). > > She also has a lot of energy and pain related problems (diagnosed as > fibro). Unfortunately she is also losing her vision due to macular > degeneration, and can't do a lot of research. Just thought I might > have been able to find a source of info for her. > > Thanks for sharing. It's very interesting. > > Maggie > > > > > >> Maggie >> >> I am not familiar with your diagnosis, but breaking down the > words, it >> appears that it might be similar to Ehler Danlos Syndrome. My > younger son is >> most affected in our family. He can stretch his skin - skin on > face can be >> stretched about 3-4 inches. His joins are very loose. He has had > multiple >> surgeries as a result of the unstable joins. He can bend many of > his joins >> so that the dislocate and then they return to normal. It is > thought that our >> family may have MIDS. There is a relationship between dysautonomia > and Ehler >> Danlos - higher percentage of those with dysautonomia having Ehler > Danlos. I >> have asked Dr. Boles (identified and doing research on MIDS) about >> relationship to mito. It doesn't think there is a relationship, > but I have >> heard of others with mito having it. It could be that those with > mito are >> just more turned in than some folks. The rest of us in the family > have some >> of the features of Ehler Danlos, but not to the extend my son has. > If it >> were not for him, we would probably never be aware of it. >> >> I guess I didn't give you much of an answer - I just don't know. >> >> laurie >> >>> From: " whoewe2002 " >>> Reply-To: >>> Date: Tue, 11 May 2004 03:46:13 -0000 >>> To: >>> Subject: Ehler Danlos, Laurie >>> >>> Laurie, >>> I have a SIL diagnosed with pseudoxanthoma elasticum and I was >>> curious if you know how that related to Ehler Danlos Syndrome. > Do >>> you know of anyone else with that diagnosis AND a diagnosis of > mito? >>> >>> Maggie >>> >>>> >>>> As for challenges, our family has Ehler Danlos syndrome with >>> various >>>> symptoms, the allergies and then the mito. We get by with lots > of >>> laughter >>>> and acceptance. >>>> >>>> laurie >>>> >>> >>> >>> >>> Medical advice, information, opinions, data and statements > contained herein >>> are not necessarily those of the list moderators. The author of > this e mail is >>> entirely responsible for its content. List members are reminded > of their >>> responsibility to evaluate the content of the postings and > consult with their >>> physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who > sends one is >>> automatically moderated or removed depending on the severity of > the attack. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
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