Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi , Do you have any of those wonderful docs for CU?? This is awesome that they are so into their work, we need more just like them!! xoxoxAnn > >Reply-To: urticaria >To: " UrticariaEgroups (DOT) Com " <urticaria > >Subject: IMPORTANT FOR COLD CU >Date: Sun, 30 Dec 2001 10:40:48 -0500 > >Hi Gang, > >I was asked by a kind doctor named Dr. Wanderer who works with a doctor by >the name of Dr. Hoffman who recently found a gene associated with familial >cold urticaria to post this message and if anyone is interested in their >studies to please contact them. This is significant research and from all >that I have read they have a real passion for their work. Love, >~Alena's Mom > >Dr Hoffman and I are collaborating on an inherited disorder. Patients have >a measles like rash with fever, joint pains, high white blood cell counts >after exposure to cold temperatures. It has been called familial cold >urticaria but in fact the rash is more measles like than hive like.The >condition is mostly passed on as an autosomal dominant condition (i.e. >occurs equallly in males or females) and is passed on to each generation >without any skipping of generations. Occassionaly we see it occuring in a >new patient as a spontaneous mutation. Dr. Hoffman has recently discovered >the gene associated with this condition. If someon in your group has these >symptoms, please contact me at aw@... > >Dr. Alan Wanderer > Ann " I get by with a little help from my friends. " _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi , Do you have any of those wonderful docs for CU?? This is awesome that they are so into their work, we need more just like them!! xoxoxAnn > >Reply-To: urticaria >To: " UrticariaEgroups (DOT) Com " <urticaria > >Subject: IMPORTANT FOR COLD CU >Date: Sun, 30 Dec 2001 10:40:48 -0500 > >Hi Gang, > >I was asked by a kind doctor named Dr. Wanderer who works with a doctor by >the name of Dr. Hoffman who recently found a gene associated with familial >cold urticaria to post this message and if anyone is interested in their >studies to please contact them. This is significant research and from all >that I have read they have a real passion for their work. Love, >~Alena's Mom > >Dr Hoffman and I are collaborating on an inherited disorder. Patients have >a measles like rash with fever, joint pains, high white blood cell counts >after exposure to cold temperatures. It has been called familial cold >urticaria but in fact the rash is more measles like than hive like.The >condition is mostly passed on as an autosomal dominant condition (i.e. >occurs equallly in males or females) and is passed on to each generation >without any skipping of generations. Occassionaly we see it occuring in a >new patient as a spontaneous mutation. Dr. Hoffman has recently discovered >the gene associated with this condition. If someon in your group has these >symptoms, please contact me at aw@... > >Dr. Alan Wanderer > Ann " I get by with a little help from my friends. " _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Nope unfortuneately these two doctors work with inherited cold urticaria. There is another website support group exclusively for familial cold urticaria that I peek at every once in awhile. There are only like half a dozen members but often find urticaria sufferers there that are not inherited and need to really be at our site. Much Love, IMPORTANT FOR COLD CU > >Date: Sun, 30 Dec 2001 10:40:48 -0500 > > > >Hi Gang, > > > >I was asked by a kind doctor named Dr. Wanderer who works with a doctor by > >the name of Dr. Hoffman who recently found a gene associated with familial > >cold urticaria to post this message and if anyone is interested in their > >studies to please contact them. This is significant research and from all > >that I have read they have a real passion for their work. Love, > >~Alena's Mom > > > >Dr Hoffman and I are collaborating on an inherited disorder. Patients have > >a measles like rash with fever, joint pains, high white blood cell counts > >after exposure to cold temperatures. It has been called familial cold > >urticaria but in fact the rash is more measles like than hive like.The > >condition is mostly passed on as an autosomal dominant condition (i.e. > >occurs equallly in males or females) and is passed on to each generation > >without any skipping of generations. Occassionaly we see it occuring in a > >new patient as a spontaneous mutation. Dr. Hoffman has recently discovered > >the gene associated with this condition. If someon in your group has these > >symptoms, please contact me at aw@... > > > >Dr. Alan Wanderer > > > > > > > Ann > > " I get by with a little help from my friends. " > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 I guess I have the " spontaneous " form of cold urticaria. No one else in my family seems to have this problem. I also don't seem to have any of the other issues associated - just the red blotchy burning rash when my body feels cold. Oh well - how boring. I guess no one would be interested to study me (lol). By the way - I have been to the website recently and it's interesting to see how many people have cold urt. You know - I'll bet this " uncommon " disorder is actually fairly common but people who have symptoms don't realize what they have and never think to mention it to anyone. -Sheryl --- Ersan and Ilgar wrote: > Nope unfortuneately these two doctors work with > inherited cold urticaria. > There is another website support group exclusively > for familial cold > urticaria that I peek at every once in awhile. > There are only like half a > dozen members but often find urticaria sufferers > there that are not > inherited and need to really be at our site. Much > Love, > IMPORTANT FOR COLD CU > > >Date: Sun, 30 Dec 2001 10:40:48 -0500 > > > > > >Hi Gang, > > > > > >I was asked by a kind doctor named Dr. Wanderer > who works with a doctor > by > > >the name of Dr. Hoffman who recently found a gene > associated with > familial > > >cold urticaria to post this message and if anyone > is interested in their > > >studies to please contact them. This is > significant research and from > all > > >that I have read they have a real passion for > their work. Love, > > >~Alena's Mom > > > > > >Dr Hoffman and I are collaborating on an > inherited disorder. Patients > have > > >a measles like rash with fever, joint pains, high > white blood cell counts > > >after exposure to cold temperatures. It has been > called familial cold > > >urticaria but in fact the rash is more measles > like than hive like.The > > >condition is mostly passed on as an autosomal > dominant condition (i.e. > > >occurs equallly in males or females) and is > passed on to each generation > > >without any skipping of generations. Occassionaly > we see it occuring in a > > >new patient as a spontaneous mutation. Dr. > Hoffman has recently > discovered > > >the gene associated with this condition. If > someon in your group has > these > > >symptoms, please contact me at aw@... > > > > > >Dr. Alan Wanderer > > > > > > > > > > > > > Ann > > > > " I get by with a little help from my friends. " > > > > > > > _________________________________________________________________ > > Chat with friends online, try MSN Messenger: > http://messenger.msn.com > > > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > If you do wish to unsubscribe then you can click > on the following link: > > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > > This list is in the service of those who suffer > from Chronic Urticaria > (hives). We strive to support and lift each other as > a worldwide > cyber-family. > > > > We share whatever needs to be shared to help one > another in our struggle > with Chronic Urticria. Information provided in this > forum is not to be taken > as medical advice. Always consult your health > professional before trying > anything new. > > > > Any posting that is off the main topic of Chronic > Urticaria, we post with > a prefix of NCU -. This is done out of respect for > those who do not wish to > read such postings. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 I guess I have the " spontaneous " form of cold urticaria. No one else in my family seems to have this problem. I also don't seem to have any of the other issues associated - just the red blotchy burning rash when my body feels cold. Oh well - how boring. I guess no one would be interested to study me (lol). By the way - I have been to the website recently and it's interesting to see how many people have cold urt. You know - I'll bet this " uncommon " disorder is actually fairly common but people who have symptoms don't realize what they have and never think to mention it to anyone. -Sheryl --- Ersan and Ilgar wrote: > Nope unfortuneately these two doctors work with > inherited cold urticaria. > There is another website support group exclusively > for familial cold > urticaria that I peek at every once in awhile. > There are only like half a > dozen members but often find urticaria sufferers > there that are not > inherited and need to really be at our site. Much > Love, > IMPORTANT FOR COLD CU > > >Date: Sun, 30 Dec 2001 10:40:48 -0500 > > > > > >Hi Gang, > > > > > >I was asked by a kind doctor named Dr. Wanderer > who works with a doctor > by > > >the name of Dr. Hoffman who recently found a gene > associated with > familial > > >cold urticaria to post this message and if anyone > is interested in their > > >studies to please contact them. This is > significant research and from > all > > >that I have read they have a real passion for > their work. Love, > > >~Alena's Mom > > > > > >Dr Hoffman and I are collaborating on an > inherited disorder. Patients > have > > >a measles like rash with fever, joint pains, high > white blood cell counts > > >after exposure to cold temperatures. It has been > called familial cold > > >urticaria but in fact the rash is more measles > like than hive like.The > > >condition is mostly passed on as an autosomal > dominant condition (i.e. > > >occurs equallly in males or females) and is > passed on to each generation > > >without any skipping of generations. Occassionaly > we see it occuring in a > > >new patient as a spontaneous mutation. Dr. > Hoffman has recently > discovered > > >the gene associated with this condition. If > someon in your group has > these > > >symptoms, please contact me at aw@... > > > > > >Dr. Alan Wanderer > > > > > > > > > > > > > Ann > > > > " I get by with a little help from my friends. " > > > > > > > _________________________________________________________________ > > Chat with friends online, try MSN Messenger: > http://messenger.msn.com > > > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > If you do wish to unsubscribe then you can click > on the following link: > > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > > This list is in the service of those who suffer > from Chronic Urticaria > (hives). We strive to support and lift each other as > a worldwide > cyber-family. > > > > We share whatever needs to be shared to help one > another in our struggle > with Chronic Urticria. Information provided in this > forum is not to be taken > as medical advice. Always consult your health > professional before trying > anything new. > > > > Any posting that is off the main topic of Chronic > Urticaria, we post with > a prefix of NCU -. This is done out of respect for > those who do not wish to > read such postings. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Dear Sheryl, My 41/2 yr old daughter has cold urticaria. Boy did she stump the pediatricians for awhile. Atrip to the beach in Maine 2 summers ago convinced us though. 5 minutes in the surf and she was a mess. So she really has to be bundled up in cold weather, even 60 degrees. She complains that her hands or feet and ankles hurt when she breaks out. She has been on Zyrtec syrup for 2 yrs now. What I am suspecting, is a link between Fibromyalgia, which is now in it's 3rd generation in our family, and is an autoimmune disorder. I myself am prone to solar urticaria (even with high SPF). I wonder if there has been any studies linking the two, as rashes (in general) are sometimes a part of fibromyalgia syndrome. We are fortunate to have a very open-minded nurse-practitioner who keeps us informed & appreciates our input as well. We wonder if she will ever outgrow the condition, or will we just have to move to a warmer climate eventually. She even complains about her stomach hurting when she eats ice cream. She feels like a prisoner to the winter months, I feel for you because of her experiences. Good luck and a warm winter to you. Haley's Mom, Sheryl wrote: I guess I have the "spontaneous" form of coldurticaria. No one else in my family seems to havethis problem. I also don't seem to have any of theother issues associated - just the red blotchy burningrash when my body feels cold. Oh well - how boring. I guess no one would be interested to study me (lol).By the way - I have been to the website recently andit's interesting to see how many people have cold urt.You know - I'll bet this "uncommon" disorder isactually fairly common but people who have symptomsdon't realize what they have and never think tomention it to anyone. -Sheryl --- Ersan and Ilgar wrote:> Nope unfortuneately these two doctors work with> inherited cold urticaria.> There is another website support group exclusively> for familial cold> urticaria that I peek at every once in awhile. > There are only like half a> dozen members but often find urticaria sufferers> there that are not> inherited and need to really be at our site. Much> Love, > IMPORTANT FOR COLD CU> > >Date: Sun, 30 Dec 2001 10:40:48 -0500> > >> > >Hi Gang,> > >> > >I was asked by a kind doctor named Dr. Wanderer> who works with a doctor> by> > >the name of Dr. Hoffman who recently found a gene> associated with> familial> > >cold urticaria to post this message and if anyone> is interested in their> > >studies to please contact them. This is> significant research and from> all> > >that I have read they have a real passion for> their work. Love,> > >~Alena's Mom> > >> > >Dr Hoffman and I are collaborating on an> inherited disorder. Patients> have> > >a measles like rash with fever, joint pains, high> white blood cell counts> > >after exposure to cold temperatures. It has been> called familial cold> > >urticaria but in fact the rash is more measles> like than hive like.The> > >condition is mostly passed on as an autosomal> dominant condition (i.e.> > >occurs equallly in males or females) and is> passed on to each generation> > >without any skipping of generations. Occassionaly> we see it occuring in a> > >new patient as a spontaneous mutation. Dr.> Hoffman has recently> discovered> > >the gene associated with this condition. If> someon in your group has> these> > >symptoms, please contact me at aw@...> > >> > >Dr. Alan Wanderer> > >> >> >> >> >> > Ann> >> > "I get by with a little help from my friends."> >> >> >>_________________________________________________________________> > Chat with friends online, try MSN Messenger:> http://messenger.msn.com> >> >> >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> > If you do wish to unsubscribe then you can click> on the following link:> > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> >> > This list is in the service of those who suffer> from Chronic Urticaria> (hives). We strive to support and lift each other as> a worldwide> cyber-family.> >> > We share whatever needs to be shared to help one> another in our struggle> with Chronic Urticria. Information provided in this> forum is not to be taken> as medical advice. Always consult your health> professional before trying> anything new.> >> > Any posting that is off the main topic of Chronic> Urticaria, we post with> a prefix of NCU -. This is done out of respect for> those who do not wish to> read such postings.> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Dear Sheryl, My 41/2 yr old daughter has cold urticaria. Boy did she stump the pediatricians for awhile. Atrip to the beach in Maine 2 summers ago convinced us though. 5 minutes in the surf and she was a mess. So she really has to be bundled up in cold weather, even 60 degrees. She complains that her hands or feet and ankles hurt when she breaks out. She has been on Zyrtec syrup for 2 yrs now. What I am suspecting, is a link between Fibromyalgia, which is now in it's 3rd generation in our family, and is an autoimmune disorder. I myself am prone to solar urticaria (even with high SPF). I wonder if there has been any studies linking the two, as rashes (in general) are sometimes a part of fibromyalgia syndrome. We are fortunate to have a very open-minded nurse-practitioner who keeps us informed & appreciates our input as well. We wonder if she will ever outgrow the condition, or will we just have to move to a warmer climate eventually. She even complains about her stomach hurting when she eats ice cream. She feels like a prisoner to the winter months, I feel for you because of her experiences. Good luck and a warm winter to you. Haley's Mom, Sheryl wrote: I guess I have the "spontaneous" form of coldurticaria. No one else in my family seems to havethis problem. I also don't seem to have any of theother issues associated - just the red blotchy burningrash when my body feels cold. Oh well - how boring. I guess no one would be interested to study me (lol).By the way - I have been to the website recently andit's interesting to see how many people have cold urt.You know - I'll bet this "uncommon" disorder isactually fairly common but people who have symptomsdon't realize what they have and never think tomention it to anyone. -Sheryl --- Ersan and Ilgar wrote:> Nope unfortuneately these two doctors work with> inherited cold urticaria.> There is another website support group exclusively> for familial cold> urticaria that I peek at every once in awhile. > There are only like half a> dozen members but often find urticaria sufferers> there that are not> inherited and need to really be at our site. Much> Love, > IMPORTANT FOR COLD CU> > >Date: Sun, 30 Dec 2001 10:40:48 -0500> > >> > >Hi Gang,> > >> > >I was asked by a kind doctor named Dr. Wanderer> who works with a doctor> by> > >the name of Dr. Hoffman who recently found a gene> associated with> familial> > >cold urticaria to post this message and if anyone> is interested in their> > >studies to please contact them. This is> significant research and from> all> > >that I have read they have a real passion for> their work. Love,> > >~Alena's Mom> > >> > >Dr Hoffman and I are collaborating on an> inherited disorder. Patients> have> > >a measles like rash with fever, joint pains, high> white blood cell counts> > >after exposure to cold temperatures. It has been> called familial cold> > >urticaria but in fact the rash is more measles> like than hive like.The> > >condition is mostly passed on as an autosomal> dominant condition (i.e.> > >occurs equallly in males or females) and is> passed on to each generation> > >without any skipping of generations. Occassionaly> we see it occuring in a> > >new patient as a spontaneous mutation. Dr.> Hoffman has recently> discovered> > >the gene associated with this condition. If> someon in your group has> these> > >symptoms, please contact me at aw@...> > >> > >Dr. Alan Wanderer> > >> >> >> >> >> > Ann> >> > "I get by with a little help from my friends."> >> >> >>_________________________________________________________________> > Chat with friends online, try MSN Messenger:> http://messenger.msn.com> >> >> >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> > If you do wish to unsubscribe then you can click> on the following link:> > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> >> > This list is in the service of those who suffer> from Chronic Urticaria> (hives). We strive to support and lift each other as> a worldwide> cyber-family.> >> > We share whatever needs to be shared to help one> another in our struggle> with Chronic Urticria. Information provided in this> forum is not to be taken> as medical advice. Always consult your health> professional before trying> anything new.> >> > Any posting that is off the main topic of Chronic> Urticaria, we post with> a prefix of NCU -. This is done out of respect for> those who do not wish to> read such postings.> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Dear Sheryl, My 41/2 yr old daughter has cold urticaria. Boy did she stump the pediatricians for awhile. Atrip to the beach in Maine 2 summers ago convinced us though. 5 minutes in the surf and she was a mess. So she really has to be bundled up in cold weather, even 60 degrees. She complains that her hands or feet and ankles hurt when she breaks out. She has been on Zyrtec syrup for 2 yrs now. What I am suspecting, is a link between Fibromyalgia, which is now in it's 3rd generation in our family, and is an autoimmune disorder. I myself am prone to solar urticaria (even with high SPF). I wonder if there has been any studies linking the two, as rashes (in general) are sometimes a part of fibromyalgia syndrome. We are fortunate to have a very open-minded nurse-practitioner who keeps us informed & appreciates our input as well. We wonder if she will ever outgrow the condition, or will we just have to move to a warmer climate eventually. She even complains about her stomach hurting when she eats ice cream. She feels like a prisoner to the winter months, I feel for you because of her experiences. Good luck and a warm winter to you. Haley's Mom, Sheryl wrote: I guess I have the "spontaneous" form of coldurticaria. No one else in my family seems to havethis problem. I also don't seem to have any of theother issues associated - just the red blotchy burningrash when my body feels cold. Oh well - how boring. I guess no one would be interested to study me (lol).By the way - I have been to the website recently andit's interesting to see how many people have cold urt.You know - I'll bet this "uncommon" disorder isactually fairly common but people who have symptomsdon't realize what they have and never think tomention it to anyone. -Sheryl --- Ersan and Ilgar wrote:> Nope unfortuneately these two doctors work with> inherited cold urticaria.> There is another website support group exclusively> for familial cold> urticaria that I peek at every once in awhile. > There are only like half a> dozen members but often find urticaria sufferers> there that are not> inherited and need to really be at our site. Much> Love, > IMPORTANT FOR COLD CU> > >Date: Sun, 30 Dec 2001 10:40:48 -0500> > >> > >Hi Gang,> > >> > >I was asked by a kind doctor named Dr. Wanderer> who works with a doctor> by> > >the name of Dr. Hoffman who recently found a gene> associated with> familial> > >cold urticaria to post this message and if anyone> is interested in their> > >studies to please contact them. This is> significant research and from> all> > >that I have read they have a real passion for> their work. Love,> > >~Alena's Mom> > >> > >Dr Hoffman and I are collaborating on an> inherited disorder. Patients> have> > >a measles like rash with fever, joint pains, high> white blood cell counts> > >after exposure to cold temperatures. It has been> called familial cold> > >urticaria but in fact the rash is more measles> like than hive like.The> > >condition is mostly passed on as an autosomal> dominant condition (i.e.> > >occurs equallly in males or females) and is> passed on to each generation> > >without any skipping of generations. Occassionaly> we see it occuring in a> > >new patient as a spontaneous mutation. Dr.> Hoffman has recently> discovered> > >the gene associated with this condition. If> someon in your group has> these> > >symptoms, please contact me at aw@...> > >> > >Dr. Alan Wanderer> > >> >> >> >> >> > Ann> >> > "I get by with a little help from my friends."> >> >> >>_________________________________________________________________> > Chat with friends online, try MSN Messenger:> http://messenger.msn.com> >> >> >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> > If you do wish to unsubscribe then you can click> on the following link:> > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> >> > This list is in the service of those who suffer> from Chronic Urticaria> (hives). We strive to support and lift each other as> a worldwide> cyber-family.> >> > We share whatever needs to be shared to help one> another in our struggle> with Chronic Urticria. Information provided in this> forum is not to be taken> as medical advice. Always consult your health> professional before trying> anything new.> >> > Any posting that is off the main topic of Chronic> Urticaria, we post with> a prefix of NCU -. This is done out of respect for> those who do not wish to> read such postings.> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 IMPORTANT FOR COLD CU> > >Date: Sun, 30 Dec 2001 10:40:48 -0500> > >> > >Hi Gang,> > >> > >I was asked by a kind doctor named Dr. Wanderer> who works with a doctor> by> > >the name of Dr. Hoffman who recently found a gene> associated with> familial> > >cold urticaria to post this message and if anyone> is interested in their> > >studies to please contact them. This is> significant research and from> all> > >that I have read they have a real passion for> their work. Love,> > >~Alena's Mom> > >> > >Dr Hoffman and I are collaborating on an> inherited disorder. Patients> have> > >a measles like rash with fever, joint pains, high> white blood cell! counts> > >after exposure to cold temperatures. It has been> called familial cold> > >urticaria but in fact the rash is more measles> like than hive like.The> > >condition is mostly passed on as an autosomal> dominant condition (i.e.> > >occurs equallly in males or females) and is> passed on to each generation> > >without any skipping of generations. Occassionaly> we see it occuring in a> > >new patient as a spontaneous mutation. Dr.> Hoffman has recently> discovered> > >the gene associated with this condition. If> someon in your group has> these> > >symptoms, please contact me at aw@...> > >> > >Dr. Alan Wanderer> > >> >> >> >> >> > Ann> >> > "I get by with a little help from my friends.">! >> >> >>_________________________________________________________________> > Chat with friends online, try MSN Messenger:> http://messenger.msn.com> >> >> >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> > If you do wish to unsubscribe then you can click> on the following link:> > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> >> > This list is in the service of those who suffer> from Chronic Urticaria> (hives). We strive to support and lift each other as> a worldwide> cyber-family.> >> > We share whatever needs to be shared to help one> another in our struggle> with Chronic Urticria. Information provided in this> forum is not to be taken> as! medical advice. Always consult your health> professional before trying> anything new.> >> > Any posting that is off the main topic of Chronic> Urticaria, we post with> a prefix of NCU -. This is done out of respect for> those who do not wish to> read such postings.> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 IMPORTANT FOR COLD CU> > >Date: Sun, 30 Dec 2001 10:40:48 -0500> > >> > >Hi Gang,> > >> > >I was asked by a kind doctor named Dr. Wanderer> who works with a doctor> by> > >the name of Dr. Hoffman who recently found a gene> associated with> familial> > >cold urticaria to post this message and if anyone> is interested in their> > >studies to please contact them. This is> significant research and from> all> > >that I have read they have a real passion for> their work. Love,> > >~Alena's Mom> > >> > >Dr Hoffman and I are collaborating on an> inherited disorder. Patients> have> > >a measles like rash with fever, joint pains, high> white blood cell! counts> > >after exposure to cold temperatures. It has been> called familial cold> > >urticaria but in fact the rash is more measles> like than hive like.The> > >condition is mostly passed on as an autosomal> dominant condition (i.e.> > >occurs equallly in males or females) and is> passed on to each generation> > >without any skipping of generations. Occassionaly> we see it occuring in a> > >new patient as a spontaneous mutation. Dr.> Hoffman has recently> discovered> > >the gene associated with this condition. If> someon in your group has> these> > >symptoms, please contact me at aw@...> > >> > >Dr. Alan Wanderer> > >> >> >> >> >> > Ann> >> > "I get by with a little help from my friends.">! >> >> >>_________________________________________________________________> > Chat with friends online, try MSN Messenger:> http://messenger.msn.com> >> >> >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> > If you do wish to unsubscribe then you can click> on the following link:> > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> >> > This list is in the service of those who suffer> from Chronic Urticaria> (hives). We strive to support and lift each other as> a worldwide> cyber-family.> >> > We share whatever needs to be shared to help one> another in our struggle> with Chronic Urticria. Information provided in this> forum is not to be taken> as! medical advice. Always consult your health> professional before trying> anything new.> >> > Any posting that is off the main topic of Chronic> Urticaria, we post with> a prefix of NCU -. This is done out of respect for> those who do not wish to> read such postings.> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Hi , Perhaps your daughter needs to be tested for Mastocytosis? It is commonly mistaken for Mastocytosis and fits with the cold urticaria. I know it is tough for the little ones to suffer with this and I know how much it sucks to be stuck inside for months. I really think it would be worth persuing the mastocytosis connection in her case. Physical urticarias (like cold and solar) and symptoms like those of fibromylagia and stomach involvment really warrant it being ruled out. If you need more information just let me know. Love, ~Alena's Mom IMPORTANT FOR COLD CU> > >Date: Sun, 30 Dec 2001 10:40:48 -0500> > >> > >Hi Gang,> > >> > >I was asked by a kind doctor named Dr. Wanderer> who works with a doctor> by> > >the name of Dr. Hoffman who recently found a gene> associated with> familial> > >cold urticaria to post this message and if anyone> is interested in their> > >studies to please contact them. This is> significant research and from> all> > >that I have read they have a real passion for> their work. Love,> > >~Alena's Mom> > >> > >Dr Hoffman and I are collaborating on an> inherited disorder. Patients> have> > >a measles like rash with fever, joint pains, high> white blood cell! counts> > >after exposure to cold temperatures. It has been> called familial cold> > >urticaria but in fact the rash is more measles> like than hive like.The> > >condition is mostly passed on as an autosomal> dominant condition (i.e.> > >occurs equallly in males or females) and is> passed on to each generation> > >without any skipping of generations. Occassionaly> we see it occuring in a> > >new patient as a spontaneous mutation. Dr.> Hoffman has recently> discovered> > >the gene associated with this condition. If> someon in your group has> these> > >symptoms, please contact me at aw@...> > >> > >Dr. Alan Wanderer> > >> >> >> >> >> > Ann> >> > "I get by with a little help from my friends.">! >> >> >>_________________________________________________________________> > Chat with friends online, try MSN Messenger:> http://messenger.msn.com> >> >> >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> > If you do wish to unsubscribe then you can click> on the following link:> > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> >> > This list is in the service of those who suffer> from Chronic Urticaria> (hives). We strive to support and lift each other as> a worldwide> cyber-family.> >> > We share whatever needs to be shared to help one> another in our struggle> with Chronic Urticria. Information provided in this> forum is not to be taken> as! medical advice. Always consult your health> professional before trying> anything new.> >> > Any posting that is off the main topic of Chronic> Urticaria, we post with> a prefix of NCU -. This is done out of respect for> those who do not wish to> read such postings.> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Hi , Perhaps your daughter needs to be tested for Mastocytosis? It is commonly mistaken for Mastocytosis and fits with the cold urticaria. I know it is tough for the little ones to suffer with this and I know how much it sucks to be stuck inside for months. I really think it would be worth persuing the mastocytosis connection in her case. Physical urticarias (like cold and solar) and symptoms like those of fibromylagia and stomach involvment really warrant it being ruled out. If you need more information just let me know. Love, ~Alena's Mom IMPORTANT FOR COLD CU> > >Date: Sun, 30 Dec 2001 10:40:48 -0500> > >> > >Hi Gang,> > >> > >I was asked by a kind doctor named Dr. Wanderer> who works with a doctor> by> > >the name of Dr. Hoffman who recently found a gene> associated with> familial> > >cold urticaria to post this message and if anyone> is interested in their> > >studies to please contact them. This is> significant research and from> all> > >that I have read they have a real passion for> their work. Love,> > >~Alena's Mom> > >> > >Dr Hoffman and I are collaborating on an> inherited disorder. Patients> have> > >a measles like rash with fever, joint pains, high> white blood cell! counts> > >after exposure to cold temperatures. It has been> called familial cold> > >urticaria but in fact the rash is more measles> like than hive like.The> > >condition is mostly passed on as an autosomal> dominant condition (i.e.> > >occurs equallly in males or females) and is> passed on to each generation> > >without any skipping of generations. Occassionaly> we see it occuring in a> > >new patient as a spontaneous mutation. Dr.> Hoffman has recently> discovered> > >the gene associated with this condition. If> someon in your group has> these> > >symptoms, please contact me at aw@...> > >> > >Dr. Alan Wanderer> > >> >> >> >> >> > Ann> >> > "I get by with a little help from my friends.">! >> >> >>_________________________________________________________________> > Chat with friends online, try MSN Messenger:> http://messenger.msn.com> >> >> >> > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> > If you do wish to unsubscribe then you can click> on the following link:> > urticaria-unsubscribe > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~> >> > This list is in the service of those who suffer> from Chronic Urticaria> (hives). We strive to support and lift each other as> a worldwide> cyber-family.> >> > We share whatever needs to be shared to help one> another in our struggle> with Chronic Urticria. Information provided in this> forum is not to be taken> as! medical advice. Always consult your health> professional before trying> anything new.> >> > Any posting that is off the main topic of Chronic> Urticaria, we post with> a prefix of NCU -. This is done out of respect for> those who do not wish to> read such postings.> >> > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.