Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 In a message dated 2/28/2005 7:26:40 P.M. Eastern Standard Time, smaangel@... writes: Im new to SMA. My daughter was only diagnosed 8 months ago. but the doctors are giving me news, that she may not have untill she is 7 on this Earth with me. But then I read that there are a few people out there that hve type 1, and are still thriving and living life to the fullest. If you can beat the odds, then that gives me hope for my daughter. Thankyou so much. Hi there. I'm sorry your doctors pulled some random number out of their butt and put a limit on your baby's life. I was dx'd with type 1 as well. I'm 25, very much ALIVE and have done many things " they " said I'd never do. Oh, my death sentence was age 2. Good luck. Amy Wife to Will 11/3/95 Mother to Olivia Isabelle 9/18/03 http://www.babiesonline.com/babies/o/oliviathegreat/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Chrissy- Where do you live? I am wondering what hat some doc pulled out the age of 7 from??? There is definitely hope out there, and you are in the right place to get as educated as you want on your care for your daughter. I would love to help in any way I can! Chrissy Krider <smaangel@...> wrote: Im new to SMA. My daughter was only diagnosed 8 months ago. but the doctors are giving me news, that she may not have untill she is 7 on this Earth with me. But then I read that there are a few people out there that hve type 1, and are still thriving and living life to the fullest. If you can beat the odds, then that gives me hope for my daughter. Thankyou so much. Chrissy mom to Alyssa 1 W/ type 2 A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 hi chrissy, welcome! there are many of us. i have type2 and i'm 38; so does my niece and she's 11. maybe someone n your area can recommend a more encouraging doctor. where are you? cheers! alana At 04:20 PM 2/28/2005, you wrote: >Im new to SMA. My daughter was only diagnosed 8 months ago. but >the doctors are giving me news, that she may not have untill she is >7 on this Earth with me. But then I read that there are a few >people out there that hve type 1, and are still thriving and living >life to the fullest. If you can beat the odds, then that gives me >hope for my daughter. Thankyou so much. > >Chrissy >mom to Alyssa 1 W/ type 2 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2005 Report Share Posted February 28, 2005 Chrissy, I am Holly,diagnosed with SMA at 15 mths, was given 2 to 3 years to live, just turned 28 a week ago, am in my fifth year of teaching college, have my own home, and my own vehicle, though I don't drive now. :-) I'm not bragging, so I hope it doesn't come across wrong. Just want you to know not to listen to the naysayers. Believe, and the impossible can become possible! :-) Blessings, Holly im new to this > > > Im new to SMA. My daughter was only diagnosed 8 months ago. but > the doctors are giving me news, that she may not have untill she is > 7 on this Earth with me. But then I read that there are a few > people out there that hve type 1, and are still thriving and living > life to the fullest. If you can beat the odds, then that gives me > hope for my daughter. Thankyou so much. > > Chrissy > mom to Alyssa 1 W/ type 2 > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Hi Chrissy. My son is , SMA 2. He is going to be 8 years old in April. He has a power chair. He sleeps using a bipap machine. (no big deal, he loves it) We have a cough machine that helps him have productive coughs when he is sick. He is doing really well. Our first doctor that diagnosed my son gave him till about 4-5 years. Obviously that doctor new very little about SMA. Don't get me wrong, when our kids get sick, you have to stay on top of it. My son has been in the hospital 5 times with respiratory infections. DOes your daughter have an Inexsufflator, nebulizer, or any other equipment? Feel free to email me on/off the list. > > From: " Chrissy Krider " <smaangel@...> > Date: 2005/02/28 Mon PM 06:20:39 CST > > Subject: im new to this > > > > Im new to SMA. My daughter was only diagnosed 8 months ago. but > the doctors are giving me news, that she may not have untill she is > 7 on this Earth with me. But then I read that there are a few > people out there that hve type 1, and are still thriving and living > life to the fullest. If you can beat the odds, then that gives me > hope for my daughter. Thankyou so much. > > Chrissy > mom to Alyssa 1 W/ type 2 > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 hey chrissy, i`m patie, 24, but soon 25. and i`m type II. doctors were giving me few years of live and now i`m still here take care patie im new to this > > > Im new to SMA. My daughter was only diagnosed 8 months ago. but > the doctors are giving me news, that she may not have untill she is > 7 on this Earth with me. But then I read that there are a few > people out there that hve type 1, and are still thriving and living > life to the fullest. If you can beat the odds, then that gives me > hope for my daughter. Thankyou so much. > > Chrissy > mom to Alyssa 1 W/ type 2 > > > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 My mom was told I wouldn't make it past 8 y/o. I am now 42 y/o and life is so good. I wish doctors wouldn't do that anymore. Before modern medicine, yes we didn't have much of a chance but now we have so many options to extend our lives and make them worth living (ex. cough-assists, bi-pap, amazing motorized wheelchairs, strong antibotics, etc.). Yes, there is much hope! Best Wishes, Lori > > Im new to SMA. My daughter was only diagnosed 8 months ago. but > the doctors are giving me news, that she may not have untill she is > 7 on this Earth with me. But then I read that there are a few > people out there that hve type 1, and are still thriving and living > life to the fullest. If you can beat the odds, then that gives me > hope for my daughter. Thankyou so much. > > Chrissy > mom to Alyssa 1 W/ type 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2008 Report Share Posted August 14, 2008 Hi I just wanted to take some time to say hi to the group, My name is sharon im 32, i live in the UK and i have RA. Ive been diagnosed for 2 years and things are no further forward for me. Mainly im frustrated, im frustrated at the restrictions which i suddenly feel have been placed on my life, im frustrated that i keep being told it will get better once the medication kicks in!! None of that helps when im a single parent to a 7 year old with lots of energy and very little sympathy!! none of it helps when ive just returned to work after 12 weeks absent on sick leave and im seriously petrified that i just cant cope and may end up unable to work. up until recently my hands were the worst affected, i also have problems with my hips, feet and shoulders and the most recent and perhaps worst affected are has been my neck which went into spasm, which is painful and depressing. I take both methotrexate( for 8 months now) and sulfasalazine(2 years, as well as anti inflammatorys, pain killers, and a mild anti depressant to help me sleep)and have yet to feel any significant effect and the methotrexate is now at a high dosage causing stomach upset, the next thing to be considered is anti TNF, not something im looking forward to!! what i want to ask the group is truly does it get better or do we just learn to cope? is anyone else around my age? or trying to juggle a job and family, while suddenly feeling very old? my father also has RA from around the same age as i am now and i can remember seeing him in pain but he agrees it was never this aggressive for him, while my poor mother is seriously struggling to watch me on the days my hands are too stiff to lift my cutlery. from this group i just want to gain a bit of support, i want to know its ok to have days when this gets me down but i also want to be sure there is in fact light at the end of this tunnel!! regards Sharon xx Quote Link to comment Share on other sites More sharing options...
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