Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Hi Kim - Where do you live? We also adopted our son, Micah, when he was 3 yrs old. (We adopted all of our kids from S. Korea, but Micah is our only one with BPES.) You will find a lot of information here. Welcome to the group. April Eisele, Colorado, USA Wife to Jon Mommy to Mira, Micah & Misha --- kim parsons <kimparsons_11@...> wrote: > thank you for your reply. we adopted our daughter > at 41/2 she had been extreamly abused and is > mentally retarded. I could not find a place to see > other (or your) photos how do I access that. I > will get one of mt older boys to show me how to post > a photo of delilah. She has had one major > reconstructive surgery where they made eye lids and > transfered many muscles in her eyes and rotated the > sockets. Plus two tucks. Look forward to talking > to you again kim parsons > costellos <tltne@...> wrote: > Hi there, > > Welcome to the group:) There are plenty of people > that can answer any questions you may have here! > > Is your son/daughter the first to have bleph ??? > Our son Ethan (wearing the pumpkin suit) is 3 years > old, and is the very first to have BPES in our > families..... He has had no surgeries as yet...He > runs around looking straight ahead! doesn't tilt his > head up, never has:) just raises his eyebrows a > little:) He goes for his 3 year check up at the > opthalmologist on April 18th, so we will see how > that goes.... > > Has your child had any surgeries? Do you have a > pic you can share:) We would all love to see if you > do:) As you can see by the web site there are 100's > of photos of adults and children around the world > with bpes to see...so very interesting, makes you > feel like your not the only one:) > > Have you ever met anyone else in person with BPES? > We got to meet a mother and daughter with it, that > was really great! They are also from New > Zealand,....there is a pic of them with our son > Ethan from there visit, at the site... > > Welcome again....talk soon:) > > leanne NZ > > -- blepharophimosis new > > > we have a ten year old with Bpei looking for any > help or info thanks > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Hi Bryony I noticed you said that you live in the South East of England. Where abouts are you? We live in Hampshire and have a one year old daughter called Holly who has BPES. She is the first in the family and is due surgery next month at Moorfields. Are you the first in the family? It would be nice to hear more about you and your experiences. E-mail me direct if you prefer. Thanks Lucy xxBryony <bryony2@...> wrote: Hi Kim This website is amazing! I have BPES and had my surgeries as a child. I imagine that technologies have come on ten fold since then. Where in the world are you? If you have any queries someone (Aussie Rob - legend!) will have answers, you are by no means alone. Take care Bryony From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of kim parsonsSent: 06 April 2006 02:25blepharophimosis Subject: Re: blepharophimosis new thank you for your reply. we adopted our daughter at 41/2 she had been extreamly abused and is mentally retarded. I could not find a place to see other (or your) photos how do I access that. I will get one of mt older boys to show me how to post a photo of delilah. She has had one major reconstructive surgery where they made eye lids and transfered many muscles in her eyes and rotated the sockets. Plus two tucks. Look forward to talking to you again kim parsonscostellos <tltne@...> wrote: Hi there, Welcome to the group:) There are plenty of people that can answer any questions you may have here! Is your son/daughter the first to have bleph ??? Our son Ethan (wearing the pumpkin suit) is 3 years old, and is the very first to have BPES in our families..... He has had no surgeries as yet...He runs around looking straight ahead! doesn't tilt his head up, never has:) just raises his eyebrows a little:) He goes for his 3 year check up at the opthalmologist on April 18th, so we will see how that goes.... Has your child had any surgeries? Do you have a pic you can share:) We would all love to see if you do:) As you can see by the web site there are 100's of photos of adults and children around the world with bpes to see...so very interesting, makes you feel like your not the only one:) Have you ever met anyone else in person with BPES? We got to meet a mother and daughter with it, that was really great! They are also from New Zealand,....there is a pic of them with our son Ethan from there visit, at the site... Welcome again....talk soon:) leanne NZ -------Original Message------- From: kimparsons_11 Date: 04/06/06 10:17:21 blepharophimosis Subject: blepharophimosis new we have a ten year old with Bpei looking for any help or info thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Hi Lucy I live just outside Oxford. Loads of people in my family have BPES and Dr Collin at Moorfield did all of my surgeries, but at Great Ormond Street Hospital. I had muscle strands taken from my thigh & put into one eyelid to create a fold when I was were 3.5, plus a wire bridge put in my nose. The other eye was done when I was 4 so that it was all done before I started school. I was lucky that the shape of my eyes before the operation meant that I didn't need additional surgery on the corners to open them up - the upper lid just need hitching up! My photos are on the site. I don’t remember anything of the surgeries and am please with the results. This really isn’t a terrible condition to live with, I can think of far worse. I have a 3 year old daughter who does not have the condition. I should imagine that it is very daunting not fully knowing what to expect for Holly but I can assure you its all fine. All of my family with the condition live normal lives, we can all drive (if we have chosen to) and the condition has had little impact. The only negative for females is the fertility thing, but as Holly is only 1 you have plenty of time to explore this avenue. If you have any questions that I haven’t covered please just ask, I bet my mum would have been grateful for this incite when I was little as it is my dad who has BPES. No doubt we will talk soon Bryony From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Lucy Chidgey Sent: 06 April 2006 20:06 blepharophimosis Subject: RE: blepharophimosis new Hi Bryony I noticed you said that you live in the South East of England. Where abouts are you? We live in Hampshire and have a one year old daughter called Holly who has BPES. She is the first in the family and is due surgery next month at Moorfields. Are you the first in the family? It would be nice to hear more about you and your experiences. E-mail me direct if you prefer. Thanks Lucy xx Bryony <bryony2@...> wrote: Hi Kim This website is amazing! I have BPES and had my surgeries as a child. I imagine that technologies have come on ten fold since then. Where in the world are you? If you have any queries someone (Aussie Rob - legend!) will have answers, you are by no means alone. Take care Bryony From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of kim parsons Sent: 06 April 2006 02:25 blepharophimosis Subject: Re: blepharophimosis new thank you for your reply. we adopted our daughter at 41/2 she had been extreamly abused and is mentally retarded. I could not find a place to see other (or your) photos how do I access that. I will get one of mt older boys to show me how to post a photo of delilah. She has had one major reconstructive surgery where they made eye lids and transfered many muscles in her eyes and rotated the sockets. Plus two tucks. Look forward to talking to you again kim parsons costellos <tltne@...> wrote: Hi there, Welcome to the group:) There are plenty of people that can answer any questions you may have here! Is your son/daughter the first to have bleph ??? Our son Ethan (wearing the pumpkin suit) is 3 years old, and is the very first to have BPES in our families..... He has had no surgeries as yet...He runs around looking straight ahead! doesn't tilt his head up, never has:) just raises his eyebrows a little:) He goes for his 3 year check up at the opthalmologist on April 18th, so we will see how that goes.... Has your child had any surgeries? Do you have a pic you can share:) We would all love to see if you do:) As you can see by the web site there are 100's of photos of adults and children around the world with bpes to see...so very interesting, makes you feel like your not the only one:) Have you ever met anyone else in person with BPES? We got to meet a mother and daughter with it, that was really great! They are also from New Zealand,....there is a pic of them with our son Ethan from there visit, at the site... Welcome again....talk soon:) leanne NZ -- blepharophimosis new we have a ten year old with Bpei looking for any help or info thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Hi again.... Poor little thing:( Good on you for adopting her, you must have a big heart:) thats awesome... So was she born mentally retarded, or is this something that came about from the abuse??? She is really lucky to have you then isn't she:) I am not familiar with the surgeries you mentioned...made eyelids? Do you mean they made a crease? What is the rotation of the sockets, and the 2 tucks? Is that to do with bleph or something else? When you are at the site, all you have to do is click on photos to view them all... Talk again soon, look forward to seeing a pic of Delilah:) Leanne -- blepharophimosis new we have a ten year old with Bpei looking for any help or info thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Welcome to this remarkable site,their are so many helpful & friendly people here to help & support you and your family. I only found this site 2 months ago,and its been a real blessing in knowing that we are not the only ones dealing with this condition. You guys must be an awesome family with extremely big hearts.God bless all of you. I look forward to hearing from you,Ally. blepharophimosis new we have a ten year old with Bpei looking for any help or info thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2006 Report Share Posted April 14, 2006 Hi Jean Welcome to the group. I am 45 years old, live in London, England. I had to have some skin grafts done from behind my ear to my eyes. I don't think that it was for the exact same reason as your daughter. I would be very happy to talk with your daughter. I can phone you - I get great rates on phone calls - less than 2 cents a minute! Bye for now, have to go to work. Let's get in touch directly - my email address is: Andy.Bowles@... Regards Shireen > blepharophimosis new > > I have an 18 year old daughter with BPES. We have been > encountering absence of menses issues over the past 2 years. > Doctors are trying an estrogen patch. Is anyone familiar with > this? Anyone whos child has had skin grafs top and bottom to > obtain eye coverage due to absence of skin? My daughter has > been looking for someone like herself to talk to. > Thank you in advance for any information. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 > > I'm amazed at how > > much info is out there. I think I'm here cause I realy dont have > > anyone who understands how overwhelming this all is. My life is a mess > > and I'm not sure I understand all of this this either. I was fine one > > day then in a matter of weeks everything changed.Any advice or info > > much appriciated. e > > It is overwhelming and yes, not very many people understand. That's a > lot to deal with as far as young and disabled kids, sorry you're going > thru that > > I'm recently diagnosed and am still reeling at how my life has changed. > > I hope you can find some relief with medications soon... > > Take care, > > > Thanks for being out there, if you ever want to unload I will listen. It realy helps to know someone is just listening .Thanks. I hope things get better for you to. e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 sure sounds like sbs to me, kelly. i also have eye pain, fatigue, hair loss symptoms, rashes, & MUCH more.... i say, get the house tested, & be SAFE! take care, victoria [] New Hello all, I am new to this group. Wanna run something by all of you who have experience with SBS. My husband and I have five small children and moved to this little farmette 2.5 years ago. We weren't in here a week yet and DH and myself came down with a major flu thing. Since that time, all my children (mostly the 4, 3 and 1 year old) keep having recurring episodes - they wake up with a fever, vomit for a few hours and then seem fine. This year the fevers have lasted 5-6 days with periodic vomitting. My 4 year complains constantly of belly pain. My 8 year old has off and on headaches and " eye pain " . DH has experienced extreme fatigue (which he has been blaming on the long commute home from work, but he's only 36 years old and falls asleep all the time after dinner). For my part, I have had two children since moving into this home, both were difficult pregnancies filled wth extreme migraines (which at the time I blamed simply on being pregnant). My hair has been fal! ling out every since moving in here! We did find some mold on the sheet rock in the laundry room and removed it. We found a small patch of mold in the children's bathroom and removed that as well. There is constant mildew on the one side of the house that gets little sun that we have to power wash two to three times in the year. I just wonder if all this isn't SBS? What do we do at this point? Hire an environmental guy to test the air quality? What if the air quality sucks?? My kids are homeschooled so it's not like I can say they are picking up these illnesses at school. Any advice would be appreciated. +JMJ+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 -Hi , sorry to hear this, and many of the symptoms do sound like sbs, mold exposure. I would have the home tested. be careful about who you hire, theres many claimed 'professionals out there who are not that professional.are you allready convenced that it's something in the home? you wont allways see the mold, it's good at hideing. sometimes mold on the outside of the home can be from mold in those walls that have worked there way through to the outside. so many things involved, hard to say. one way to know if its the house is to leave for a while and see if everyones felling better, maybe not all better but better. some immedite type symptoms may improve very quick when going outside, it's hard to really give you advice but I would try to find out asap, it can be very hard on little kids.-- In , " " <ExtraEcclesiamNullaSalus@...> wrote: > > Hello all, > > I am new to this group. Wanna run something by all of you who have experience with SBS. My husband and I have five small children and moved to this little farmette 2.5 years ago. We weren't in here a week yet and DH and myself came down with a major flu thing. Since that time, all my children (mostly the 4, 3 and 1 year old) keep having recurring episodes - they wake up with a fever, vomit for a few hours and then seem fine. This year the fevers have lasted 5-6 days with periodic vomitting. My 4 year complains constantly of belly pain. My 8 year old has off and on headaches and " eye pain " . DH has experienced extreme fatigue (which he has been blaming on the long commute home from work, but he's only 36 years old and falls asleep all the time after dinner). For my part, I have had two children since moving into this home, both were difficult pregnancies filled wth extreme migraines (which at the time I blamed simply on being pregnant). My hair has been falling out every since moving in here! > > We did find some mold on the sheet rock in the laundry room and removed it. We found a small patch of mold in the children's bathroom and removed that as well. There is constant mildew on the one side of the house that gets little sun that we have to power wash two to three times in the year. > > I just wonder if all this isn't SBS? What do we do at this point? Hire an environmental guy to test the air quality? What if the air quality sucks?? > > My kids are homeschooled so it's not like I can say they are picking up these illnesses at school. > > Any advice would be appreciated. > > > +JMJ+ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 , I am feeling a little stupid at the moment but I am not sure what SBS is, OK duh I got it. I should slap myself for that one.... What your experiencing I agree with " Who " 100%. I am going to guess here but this is somewhat like what I believe made my situation much worse. You say there were places where you removed the mold... Depending on how you did it this could have been a BIG no no. If you had " mold " in the wall of the laundry room, this is the first big red flag to me, that means there was probably a leak or many leaks over time and the fact that it remained there is a problem. I won't try to guess which type of mold you were dealing with but my suspicion is not good, anyway by " removing it you may have sent whatever was in the walls airborne in both locations. I learned the hard way the only way to work on or attempt to remove any of this stuff, the only safe way that is, is to look like a creature from out of space. Meaning in full hazmad gear and to quarantine off the areas you are working on. I know it sounds a little intense but in the long run you'll find there is no other way anyway and by that time everyone will be very sick. Since there are children involved that makes it that much more imperative you deal with this immediately. There poor little bodies are not yet equipped to deal with some of these things. Also your husbands symptoms are exactly what I started going through. I barley would make it away from the table. My suggestion is to start taking this very seriously and do some intensive studying quick. maybe you can find a way to integrate it into your school studies and the kids can learn some about it as well (without scaring them of course. You will have enough anxiety to deal with for the rest of them) But due to the fact that they are home schooled they are spending an enormous amount of time in the home so that is why I suggest making it a priority. I hope this helps you get started. Chris... <ExtraEcclesiamNullaSalus@...> wrote: Hello all, I am new to this group. Wanna run something by all of you who have experience with SBS. My husband and I have five small children and moved to this little farmette 2.5 years ago. We weren't in here a week yet and DH and myself came down with a major flu thing. Since that time, all my children (mostly the 4, 3 and 1 year old) keep having recurring episodes - they wake up with a fever, vomit for a few hours and then seem fine. This year the fevers have lasted 5-6 days with periodic vomitting. My 4 year complains constantly of belly pain. My 8 year old has off and on headaches and " eye pain " . DH has experienced extreme fatigue (which he has been blaming on the long commute home from work, but he's only 36 years old and falls asleep all the time after dinner). For my part, I have had two children since moving into this home, both were difficult pregnancies filled wth extreme migraines (which at the time I blamed simply on being pregnant). My hair has been falling out every since moving in here! We did find some mold on the sheet rock in the laundry room and removed it. We found a small patch of mold in the children's bathroom and removed that as well. There is constant mildew on the one side of the house that gets little sun that we have to power wash two to three times in the year. I just wonder if all this isn't SBS? What do we do at this point? Hire an environmental guy to test the air quality? What if the air quality sucks?? My kids are homeschooled so it's not like I can say they are picking up these illnesses at school. Any advice would be appreciated. +JMJ+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 This sounds like a situation that you REALLY don't want to be in. I don't think testing would be useful unless you need to document a situation so you can break a lease. (In that case, DO IT.) This 'farmette' probably had a serious problem in the past (maybe it sat empty for some time) and this problem was covered up. AS A PARENT YOU MUST ACT. This situation could be very dangerous.. PLEASE GET OUT OF THERE NOW.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 , would it be okay if I forward your letter to some other people? I think it is a perfect example of what we are dealing with here.. Similar situation happened to me and I made the mistake of not figuring it out for many, many years. This has really screwed up my health PLEASE do a search on the word 'trichothecene' and see if the symptoms you are experiencing resemble that of trichothecene mycotoxin poisoning.. you can also find more examples and refs for your doctor at mycotoxicosis.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2006 Report Share Posted September 22, 2006 - MOVE, MOVE MOVE, you HAVE to move... Get out of there.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 if God Bless me I will do all I can to help people in need I pray you don't live under HUD Voucher, They Protect the Landlord not the people. They say just what LiveSimply say MOVE, MOVE, MOVE, that place belong to that person!?. and they want pay their part of the rent or tell you. next thing you no and eviction on your Credit and it's HUD that's not paying the rent? to help people like us fine a safe place. nothing against you livesimply for I agree she must move ASAP most people can't do that so easily so maybe someone with a heart and knowledge on mold. can help back up Attorneys for it seem if you are living under HUD You have no rights at all Go Figure. Not This time again I'm loosing because of HUD Inspectors not having good training and led paint and Mold the list goes on. Elvira Re: [] New - MOVE, MOVE MOVE, you HAVE to move... Get out of there.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 I agree Elvira, It would be nice to see a, or a few attourneys step up to the plate and make this subject thier mission like Jonny Cockren (however you spell it) did for criminal defense. Hmmm thinking, thinking... I wonder if it is to late for me to try something like that? Anyway.. Chris... elvira52 <Elvira52@...> wrote: if God Bless me I will do all I can to help people in need I pray you don't live under HUD Voucher, They Protect the Landlord not the people. They say just what LiveSimply say MOVE, MOVE, MOVE, that place belong to that person!?. and they want pay their part of the rent or tell you. next thing you no and eviction on your Credit and it's HUD that's not paying the rent? to help people like us fine a safe place. nothing against you livesimply for I agree she must move ASAP most people can't do that so easily so maybe someone with a heart and knowledge on mold. can help back up Attorneys for it seem if you are living under HUD You have no rights at all Go Figure. Not This time again I'm loosing because of HUD Inspectors not having good training and led paint and Mold the list goes on. Elvira Re: [] New - MOVE, MOVE MOVE, you HAVE to move... Get out of there.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 Chris SBS is sick building syndrome. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2006 Report Share Posted September 23, 2006 -yes, we could use some hero's.lawyers,doctors, etc. comeing together in this fight. we need it so bad. we are fighting against a lot of power and money and criminal minds.-- In , Tazin Round <unitedstatesvet@...> wrote: > > I agree Elvira, > It would be nice to see a, or a few attourneys step up to the plate and make this subject thier mission like Jonny Cockren (however you spell it) did for criminal defense. Hmmm thinking, thinking... I wonder if it is to late for me to try something like that? Anyway.. > Chris... > > elvira52 <Elvira52@...> wrote: > if God Bless me I will do all I can to help people in need I pray you don't live under HUD Voucher, They Protect the Landlord not the people. > > They say just what LiveSimply say MOVE, MOVE, MOVE, that place belong to that person!?. and they want pay their part of the rent or tell you. next thing you no and eviction on your Credit and it's HUD that's not paying the rent? to help people like us fine a safe place. nothing against you livesimply for I agree she must move ASAP most people can't do that so easily so maybe someone with a heart and knowledge on mold. can help back up Attorneys for it seem if you are living under HUD You have no rights at all Go Figure. > > Not This time again I'm loosing because of HUD Inspectors not having good training and led paint and Mold the list goes on. > > Elvira > > Re: [] New > > - > > MOVE, MOVE MOVE, you HAVE to move... > > Get out of there.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Hi Janice,I have been on Gleevec since 05 400 mg I seem to get more ear wax than normal.Mine was clogged and the pulse thing was there.I softened it with sweet oil let stand over night to loosen it up warm water and a syringe. from Tn.dxt 12/05 [ ] new hi i am new here, i just got diagnosed with cml about 2 months ago and i am on glivec, all fully paid for in nz. i have one side effect, blocked ear that has a pulse, and annoys me does anyone else get this it, it effects my sleep janice ________________________________________________________________________________\ ____ Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. http://tv./collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2007 Report Share Posted October 22, 2007 Hi , Welcome to the group. The group is basically a support group for people with CML and their loved ones. You can interact with others who understand what you're going through with your diagnosis and hopefully feel less alone. For the most part, we are not medical professionals, we are mostly patients who have " been there, done that " and can offer support and information to each other through our experiences. Some of our members go to the top CML experts in the world and they share with us what they learn from these great doctors. Other members read medical journals and share what they learn from those and some members are great for offering emotional support. With over 700 members, we have all types of people here and they are from all over the world although the majority seem to be from the US. You can choose to get the posts from the group either individually, in a digest form (one email a day with all the posts on it) or you can choose to not get any emails at all. You can set your preference by clicking on " edit membership " at the top of your page. Have you had any type of response in the three years you've had CML? Are you on Gleevec or Sprycel or another drug? I hope this answers some of your questions. Feel free to tell us more about yourself and ask any other questions you might have. Take care, Tracey dx Jan 2002 400mg Gleevec > > Hi, > > I am new to this group, but not to the diagnosis; 3 yrs of CML and no remission. Right now, I would like to know how this group communication works. The most recent e-mail from donnaberry...received a response stating " my patients " . Is there a medical professional responding to our concerns? Also, I am not sure how I signed into the group through CML support, as I was not feeling well that night. If this and other transmissions are good, then great. Is there a way for me to varify my " membership? > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2007 Report Share Posted October 23, 2007 Hi , Tracey as usual answered very well. We do have a doc that is a member of the group and as Tracey stated we get great info here from those that go to the experts in this field. I started on Gleevec in 04 and it knocked me into remission within a month or so..I hope you have some luck with treatment, if Gleevec is not working there are other medications out there. Terry On 10/22/07, Tracey <traceyincanada@...> wrote: > > Hi , > > Welcome to the group. The group is basically a support group for > people with CML and their loved ones. You can interact with others > who understand what you're going through with your diagnosis and > hopefully feel less alone. > > For the most part, we are not medical professionals, we are mostly > patients who have " been there, done that " and can offer support and > information to each other through our experiences. > > Some of our members go to the top CML experts in the world and they > share with us what they learn from these great doctors. Other > members read medical journals and share what they learn from those > and some members are great for offering emotional support. With over > 700 members, we have all types of people here and they are from all > over the world although the majority seem to be from the US. > > You can choose to get the posts from the group either individually, > in a digest form (one email a day with all the posts on it) or you > can choose to not get any emails at all. You can set your preference > by clicking on " edit membership " at the top of your page. > > Have you had any type of response in the three years you've had CML? > Are you on Gleevec or Sprycel or another drug? > > I hope this answers some of your questions. Feel free to tell us > more about yourself and ask any other questions you might have. > > Take care, > Tracey > dx Jan 2002 > 400mg Gleevec > > > > > > Hi, > > > > I am new to this group, but not to the diagnosis; 3 yrs of CML > and no remission. Right now, I would like to know how this group > communication works. The most recent e-mail from > donnaberry...received a response stating " my patients " . Is there a > medical professional responding to our concerns? Also, I am not sure > how I signed into the group through CML support, as I was not feeling > well that night. If this and other transmissions are good, then > great. Is there a way for me to varify my " membership? > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Greetings from the National Pesticide Information Center. We're pleased to announce the launch of a whole new Spanish-language version of our website at htpp://npic.orst.edu/es. Please share any feedback you have with us by emailing npic@.... Many thanks to the multiple reviewers who provided valuable input. Last year, NPIC made services available over the phone in over 170 languages, and disseminated NPIC brochures and fliers in Spanish. Now that the Spanish website is operational, our next goal is to translate original NPIC publications (fact sheets, common pesticide questions) into Spanish. If you would like to be notified when NPIC releases a new publication, sign up for our list-serve by emailing npicupdates@... with the word " subscribe " in the subject line. Thank you for sending questions our way at 1-800-858-7378(PEST), and enjoy the new website in Spanish. ++++++++++++++++++++++ National Pesticide Information Center Oregon State University *1-800-858-7378* npic.orst.edu Service available in Spanish Quote Link to comment Share on other sites More sharing options...
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