Guest guest Posted January 10, 2004 Report Share Posted January 10, 2004 hi joana, my name is rachel and i'm 23 and going to school in berkeley (i have SMA type 2). i would love to talk with you about the wheelchair accessiblity around brazil... feel free to contact me on instant messenger -- my messenger name is butterfleye80 hope to hear from you soon.... -rachel Original Message: ----------------- From: Joana Palma joanaroquette@... Date: Sat, 10 Jan 2004 20:09:03 -0200 Subject: Hallo <html><body> <tt> Hi,<BR> <BR> I'm just writing to say hallo to everyone, I'm a new member on the list. My name is Joana, I live in Brazil, I'm 21, and I have SMA 2 (using eletric wheelchair). I'm sorry for my poor english, you'll notice I'm not a english teacher, but anyway, I'll do my best to be understandable.<BR> <BR> I got on the list because I want to get contact with other SMA people and families... I really don't know many people with SMA and I think this would be a great experience. <BR> <BR> I work in the law department of a firm here in Rio and I'm at college, studying law. I have a cute boyfriend, he's always near to help, support (to love). <BR> <BR> I'm glad to be writing and hope to write often... <BR> <BR> Bye and see you soon!<BR> <BR> Joana<BR> <BR> <BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi Joana! My name is Shaylene I am 22 and , My 3 year old daughter Sierra Journey has SMA type 2! You said that you were a new member to the group so welcome this group is wonderful...there is also another group..not sure if you knew ....www.smasupport...they also have an e-mail chat! Both groups are wonderful! Hope to talk to you again! Bye Shaylene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi Joana, Welcome. I am from Malaysia, my daughter is 5 with SMA II. She has just started kindergarten last week. Regards, Mee Ling Joana Palma <joanaroquette@...> wrote: Hi, I'm just writing to say hallo to everyone, I'm a new member on the list. My name is Joana, I live in Brazil, I'm 21, and I have SMA 2 (using eletric wheelchair). I'm sorry for my poor english, you'll notice I'm not a english teacher, but anyway, I'll do my best to be understandable. I got on the list because I want to get contact with other SMA people and families... I really don't know many people with SMA and I think this would be a great experience. I work in the law department of a firm here in Rio and I'm at college, studying law. I have a cute boyfriend, he's always near to help, support (to love). I'm glad to be writing and hope to write often... Bye and see you soon! Joana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 welcome joana.......i´m melanie, 26, got type II and from germany. it would be great to hear something from you. you can send me also an email to ottawa@... -- +++ GMX - die erste Adresse für Mail, Message, More +++ Bis 31.1.: TopMail + Digicam für nur 29 EUR http://www.gmx.net/topmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 Welcome to the group. I was dx in 2002 & had Rituxan and Fludarbine. Follow up each 6 months--scans and blood tests show that I am in NED (no evidence of disease). As you can, you might include additional information about your treatment--did you have a second opinion? Where is your treatment? Is your onc a specialist in CLL? etc Best of luck Gordon Dobler Lesley Drake <lez.baz@...> wrote: Hallo, I am a new member to this group. In 2001/2002 I was diagnosed NHL SLL stage 4.My first treatment in July 2002 was monthly x6 Chlorambucil which gave me 2 years remission.Last July after new BMB and Scans I was told I had relapsed and they are now calling it CLL????Treatment began with Chlorambucil but after 2 months found not to be working so am now in the middle of monthly Fludarabine, have had to stop for last 2 months due to low counts so I feel I am now in limbo waiting to get stroner for next month. I hope that you are all as well as you can be with this illness...Regards Lesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 -Hallo Gordon . Thanks for the welcome. I did not get a second opinion as I just took what the haemotologist and oncologist as the only opinion I could have.i have never been ill in my life until this. I live on an island and my hospital has NHL clinic one a month which at the moment I attend monthly for blood checks and examinations. My cancer unit is on the mainland and the oncologist is based ther, the haem'is based here on the island. I was 53 years old at diagnosis, which apart from some enlarged lymph glands after a really bad cold I had no symtoms at all. I was told I was at stage 4 at diagnosis, bone marrow was also effected at 30% Is there anything esle I can tell you ? lesley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Thanks for the information. You received some good information from Lori and . The web site www.clltopics.com is an excellent source of information about our disease. It is most always suggested that new patients get a second opinion. It gives the patient confidence that the treatment is on target and the diagnosis is confirmed. Good luck. Gordon Lesley Drake <lez.baz@...> wrote: -Hallo Gordon . Thanks for the welcome. I did not get a second opinion as I just took what the haemotologist and oncologist as the only opinion I could have.i have never been ill in my life until this. I live on an island and my hospital has NHL clinic one a month which at the moment I attend monthly for blood checks and examinations. My cancer unit is on the mainland and the oncologist is based ther, the haem'is based here on the island. I was 53 years old at diagnosis, which apart from some enlarged lymph glands after a really bad cold I had no symtoms at all. I was told I was at stage 4 at diagnosis, bone marrow was also effected at 30% Is there anything esle I can tell you ? lesley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 I am a new member and would like to know how I can do in my condition of BEPS which is so wierd in our country kenya.I am 23 yrs old and so worried so please help me Mildred Quote Link to comment Share on other sites More sharing options...
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