Scleroderma Information » Scleroderma » 17 year old with possibility of scleroderma
Question:
I was diagnosed in 1956, but had the disease for some years before that. You are right, Ronni, there are a great many of us out here, living long, productive lives. I get so angry when I hear of someone being told by their doctor that it is a virtual "death sentence." Especially when we all know this is just NOT true. I’d like to whack that doctor upside their face! <VVVBG> Judy — SD World Scleroderma and Other Autoimmune Diseases Email Support List, Message Board , Chat Room http://userzweb.lightspeed.net/~auntjudy/SDWorld/sdworld.htm – Hide quoted text — Show quoted text -> Jennifer, > Doreen’s death upset me too, as it did many others. I hear about the deaths, > but I hear more about people who’ve lived with scleroderma for decades. I, > myself, probably had scleroderma for 10 years before I was diagnosed — and > that was in 1990. I have the diffuse type of scleroderma, which is the most > severe form. Last month, I spent the afternoon with a woman who has had SD for > 45 years. > When I was first diagnosed, in my mid-30s, I also focused on the "death" > aspect. In time, when I saw all the many variations of the disease and met > hundreds of people who have lived with SD for many years, I relaxed somewhat. > I think this will happen with you, too, if you do, in fact, get your diagnosis > confirmed. > Certainly, at 17, the realization that you may have a life-threatening illness > must be terrifying. I’m sure your mom is helpful, and it may also help you to > talk with others too (even a counselor). > I’m curious as to why your mom made those comments about the conference. I > thought the Houston conference was great, and the Bluebonnet Chapter did a > great job. This year’s conference was also wonderful, with a record attendance. > Ronni > ~Scleroderma Awareness Is > Key to a Cure~ > SCLERODERMA FOUNDATION > Call 1-800-722-HOPE
Response:
Hi I’m Jennifer. I’m 17 years old with a possibility of scleroderma. My ANA came back negative and my sed rate was normal but my mother, who has CREST, said that some people never go positive on the ANA. I have the red dots (T in CREST) and possible raynauds and espogeical (or how ever you spell it). I haven’t had any time to absorb the news. I’ve been so busy lately. I know what it has done to my mother, and I know the same thing could happen to me. She’s got full blown CREST. I’m glad there’s other people to talk to. Jennifer Live for today for you have no reassurance that there will be a tomorrow.
Response:
>From: jdange…@aol.com (Jen Gilbertson) >Date: Mon, 23 August 1999 04:21 PM EDT >Message-id: <19990823162112.18712.00003…@ng-cc1.aol.com> >Hi I’m Jennifer. I’m 17 years old with a possibility of scleroderma. My ANA >came back negative and my sed rate was normal but my mother, who has CREST, >said that some people never go positive on the ANA. I have the red dots (T in >CREST) and possible raynauds and espogeical (or how ever you spell it). I >haven’t had any time to absorb the news. I’ve been so busy lately. I know >what >it has done to my mother, and I know the same thing could happen to me. She’s >got full blown CREST. I’m glad there’s other people to talk to.
Jennifer, Given your mom’s situation, it’s reasonable to assume that you have scleroderma, but it’s quite possible you don’t. Did the doctor tell you that you might have scleroderma? Even if it is determined that you do have scleroderma, keep in mind that this is a variable disease. Although your mom may suffer from various symptoms, it doesn’t mean you’ll have the same problems she does. What kind of esophageal symptoms are you having? I hope you have a good rheumatologist to figure this out – someone who isn’t overly biased into putting you into the "scleroderma category" because your mom has the disease. Your symptoms may be related to something quite different. Raynaud’s itself is present in 5-10% of the general population. Let us know how you’re doing. You found an excellent place for support. Ronni ~Scleroderma Awareness Is Key to a Cure~ SCLERODERMA FOUNDATION Call 1-800-722-HOPE
Response:
Ronnie, my doctor is thinking that I have scleroderma because of the symptoms that are showing up. I have the red dots and spider veins which my doctor is very sure is the T in CREST. The only person who’s caught me in a raynauds attack is my mother. I have heartburn no matter what i eat. I could eat a bowl of cereal and have it. My mom won’t take me to any rheumatologists in town because she’s been to all of them and they aren’t any good. Fargo is a small town. My mother is finally going to an internal resident clinic here in town. My mom said that a whole lot of people don’t go positive on their ANA and never do. I will have occasional attacks. I’ll be sick day after day for a month or two, which kinda gets in the way of school. I haven’t been as sick as my mom but she gets worried when I do get sick for a period of time. We were going to go to the conference in San Diego but she heard it wasn’t supposed to be any good. My mom is a member of the bluebonnet chapter, has tons of friends she corresponds with on the internet, and went to the conference when it was in Houston. She’s helping me understand the nature of the disease but all I see is death. I talked to Doreen a couple of times and when I found out she died, I just broke down and cried for hours on end. It’s just said to see mistakes made in hospitals. Jennifer Gilbertson Live for today for you have no reassurance that there will be a tomorrow.
Response:
>We were going to >go to the conference in San Diego but she heard it wasn’t supposed to be any >good. My mom is a member of the bluebonnet chapter, has tons of friends she >corresponds with on the internet, and went to the conference when it was in >Houston. She’s helping me understand the nature of the disease but all I see >is >death.
Jennifer, Doreen’s death upset me too, as it did many others. I hear about the deaths, but I hear more about people who’ve lived with scleroderma for decades. I, myself, probably had scleroderma for 10 years before I was diagnosed — and that was in 1990. I have the diffuse type of scleroderma, which is the most severe form. Last month, I spent the afternoon with a woman who has had SD for 45 years. When I was first diagnosed, in my mid-30s, I also focused on the "death" aspect. In time, when I saw all the many variations of the disease and met hundreds of people who have lived with SD for many years, I relaxed somewhat. I think this will happen with you, too, if you do, in fact, get your diagnosis confirmed. Certainly, at 17, the realization that you may have a life-threatening illness must be terrifying. I’m sure your mom is helpful, and it may also help you to talk with others too (even a counselor). I’m curious as to why your mom made those comments about the conference. I thought the Houston conference was great, and the Bluebonnet Chapter did a great job. This year’s conference was also wonderful, with a record attendance. Ronni ~Scleroderma Awareness Is Key to a Cure~ SCLERODERMA FOUNDATION Call 1-800-722-HOPE
Response:
Hi Jennifer! I am sorry that you have to deal with this disease and at the same time watch your Mum deal with it. It is not easy. Please keep in touch with the group, we all care about you. Hugs from Susan – Hide quoted text — Show quoted text -Jen Gilbertson wrote: > Hi I’m Jennifer. I’m 17 years old with a possibility of scleroderma. My ANA > came back negative and my sed rate was normal but my mother, who has CREST, > said that some people never go positive on the ANA. I have the red dots (T in > CREST) and possible raynauds and espogeical (or how ever you spell it). I > haven’t had any time to absorb the news. I’ve been so busy lately. I know what > it has done to my mother, and I know the same thing could happen to me. She’s > got full blown CREST. I’m glad there’s other people to talk to. > Jennifer > Live for today for you have no reassurance that there will be a tomorrow.
Response:
Hey Jennifer, I am so sorry that I havent introduced myself earlier. I can understand your concern about having sd. My Momma and Aunt both have/had it and it is believed my Grandmother had it. This disease is not hereditary but has somewhat of a weak genetic link. My point is you are so young and have a future just waiting. Dont dwell on it as that in itself will cause you to become ill. It is scary but please know you are not alone and the more you take the time to educate yourself about sd and its various forms, the less scary it will become. We are all here for you sweetie in supporting you and your Mom and your family. If you need answers to questions or reassurance of anything, just ask and we will do are best to answer or direct you to a link that may help you. We are not doctors. we are a family that supports one another with love, understanding and compassion and it just isnt about doing this because of the sd, thats our common link. It is because so many unselfish people give of theirselves that all of us in this ng family can learn from one another. My daughter, Raena, worries about her developing sd also. I try to reassure her that it is not hereditary and her future is bright. You are very intelligent and compassionate from what I have read in your postings. Dont worry yourself sick about sd. you need to talk with your moms doctor and please sweetie go to all the links offered to educate yourself. Most of all, know that each and everyone of us want the best for you so you keep posting and asking and we will do our best to answer. Love and Hugs Colleen – Hide quoted text — Show quoted text -Jen Gilbertson wrote: > Ronnie, my doctor is thinking that I have scleroderma because of the symptoms > that are showing up. I have the red dots and spider veins which my doctor is > very sure is the T in CREST. The only person who’s caught me in a raynauds > attack is my mother. I have heartburn no matter what i eat. I could eat a bowl > of cereal and have it. My mom won’t take me to any rheumatologists in town > because she’s been to all of them and they aren’t any good. Fargo is a small > town. My mother is finally going to an internal resident clinic here in town. > My mom said that a whole lot of people don’t go positive on their ANA and never > do. I will have occasional attacks. I’ll be sick day after day for a month or > two, which kinda gets in the way of school. I haven’t been as sick as my mom > but she gets worried when I do get sick for a period of time. We were going to > go to the conference in San Diego but she heard it wasn’t supposed to be any > good. My mom is a member of the bluebonnet chapter, has tons of friends she > corresponds with on the internet, and went to the conference when it was in > Houston. She’s helping me understand the nature of the disease but all I see is > death. I talked to Doreen a couple of times and when I found out she died, I > just broke down and cried for hours on end. It’s just said to see mistakes made > in hospitals. > Jennifer Gilbertson > Live for today for you have no reassurance that there will be a tomorrow.
Response:
You hold and I will help whack or viseversa. When I was 1st dx, my doctor asked me if I knew I only had 5 years to live why would I even want to know this fact? My reply was because it is my 5 years and not theirs. I really believe that the doctors dont mean to come across or insensitive to our prediciment, but they feel up against a wall and try to offer what ever. Its not right but it does let us know we need to do further research on our own. Thank you again from the bottom of my heart for the sites you posted for us. You are a saint!!!!! Colleen – Hide quoted text — Show quoted text -Aunt Judy wrote: > I was diagnosed in 1956, but had the disease for some years before that. You are > right, Ronni, there are a great many of us out here, living long, productive > lives. I get so angry when I hear of someone being told by their doctor that it > is a virtual "death sentence." Especially when we all know this is just NOT > true. I’d like to whack that doctor upside their face! <VVVBG> > Judy > — > SD World > Scleroderma and Other Autoimmune Diseases > Email Support List, Message Board , Chat Room > http://userzweb.lightspeed.net/~auntjudy/SDWorld/sdworld.htm > > Jennifer, > > Doreen’s death upset me too, as it did many others. I hear about the deaths, > > but I hear more about people who’ve lived with scleroderma for decades. I, > > myself, probably had scleroderma for 10 years before I was diagnosed — and > > that was in 1990. I have the diffuse type of scleroderma, which is the most > > severe form. Last month, I spent the afternoon with a woman who has had SD > for > > 45 years. > > When I was first diagnosed, in my mid-30s, I also focused on the "death" > > aspect. In time, when I saw all the many variations of the disease and met > > hundreds of people who have lived with SD for many years, I relaxed somewhat. > > I think this will happen with you, too, if you do, in fact, get your diagnosis > > confirmed. > > Certainly, at 17, the realization that you may have a life-threatening illness > > must be terrifying. I’m sure your mom is helpful, and it may also help you to > > talk with others too (even a counselor). > > I’m curious as to why your mom made those comments about the conference. I > > thought the Houston conference was great, and the Bluebonnet Chapter did a > > great job. This year’s conference was also wonderful, with a record > attendance. > > Ronni > > ~Scleroderma Awareness Is > > Key to a Cure~ > > SCLERODERMA FOUNDATION > > Call 1-800-722-HOPE
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