Scleroderma Information » Scleroderma » New To Group
Question:
Debby – If you’re in the US, you can call the Scleroderma Foundation at 1-800-722-HOPE to get more information about the disease. The limited form of scleroderma (previously referred to as CREST) typically has a "slow" progression with Raynaud’s starting long before actual skin tightening, even years. Organ involvement is less likely to happen early in limited. If your son hasn’t seen a scleroderma specialist yet, s/he may be able to help him get a more realistic view of his specific condition. There’s a list of treatment centers in the US at http://scleroderma.org/medical/centers.htm Tell your son to stay warm! We’ll be thinking about him. Amie – Hide quoted text — Show quoted text -Debby wrote: > Hi my name is Debby and my son has recently been diagnosed with Crest > Syndrome. This is a scary thing and made worse by not knowing what to > expect. I’ve read a lot of info on the disease but rarely if ever see > a time-line of any kind mentioned. While I do know it’s a diverse > disease affecting everyone differently, there must be more info > regarding what and when to expect certain symptoms. Right now all he > has is Raynauds but it’s pretty bad with ulcers and extreme > sensitivity. Is there any help out there? I would so appreciate any > info that can be given. David, my son, is 30 years old, if that makes > any difference at all. > Thank you all for reading my post. I hope you are having a good day! > Blessings on each and everyone one! Debby
Response:
Hi Dave, Yes, I remember peace! I remember all the now silly things I use to worry about. But they pale when compared with a loved one being sick, especially when it’s your child. It’s a mother’s duty to worry, don’t ya know? And I’m good at my job! I think some of this horrendous worry could have been prevented if the doctor had used a better bed-side manner. He merely stated that David had Crest, pilfered through a stack of brochures, handed us one and said I’ll see you in 5 weeks. Nothing more. We had no idea what Crest was and didn’t have a clue as to what to ask. Getting "initial" informaion from the internet is a rough way to go. There’s too many questions unanswered about your own condition. It’s too scary and 5 weeks is a long time to wait to get those answers. We live in Arkansas so doctors are far and few between. A doctor that doesn’t go in to detail about this disease leaves his patient to draw conclusions that may or may not apply. This, in turn, leaves us wide open to depression and anger instead of action and hope. But we’re working on it! And with the help from all of you on this forum, I have my suspicians that we might just make it! So I thank you all for your support, I think I may need it for a long time. But you are helping!!!!!! I hope this is a good day for all and God’s Blessings on each and everyone!! Debby C – Hide quoted text — Show quoted text -"Dave Wilcher" <dwilc…@woh.rr.com> wrote in message <news:JJY4a.207024$i73.42520152@twister.neo.rr.com>… > Debby wrote: > > Thanks Eleanor, > > I think I’ve read all I can for a few days. This really takes a toll > > emotionally, so in order not to fall apart I think I need to quit > > reading for a while. Everyone seems so strong on this forum, I feel > > very weak by comparison. Still not quite willing to believe…not > > totally anyway. > Debby, we’re not so strong; we’ve just had more time to get used to > things. Denial is part of us human’s way of getting used to things. > Anger too. Acceptance will come with time, and with it you can > find peace. > dave
Response:
I want to thank each of you that answered my post. I wish we could all meet under different circumstances. There seems to be a lot of information on the web, but then again…there isn’t. Nothing concrete, that is. I realize that the disease is different with different folks but that doesn’t really give you any guide lines at all. For instance, does it become active once the first symptoms appear? Or can it just disappear for years? Will he be sick within the next six months, what? These are the hardest questions and there seems to be no answers available. Right now all he has is the Raynauds and high blood pressure, thank goodness. But he is a young man and as with most young people he has plans for the future. He’s engaged but unsure as how to follow through. He works a hard job, road construction, how long will he be able to work? His life seems to be in limbo right now without at least a tenative outlook. Although he continues as though nothing is wrong. He has a positive attitude and I know that means a lot when you’re fighting disease. (and many things) Are there answers available? Thank you again and I hope today was a good day for all! Blessings on each and everyone! Debby – Hide quoted text — Show quoted text -nelly…@webtv.net (Nell) wrote in message <news:11820c52.0302132313.4571d3eb@posting.google.com>… > jimchast…@msn.com (Debby) wrote in message <news:ae891012.0302110929.56c802fb@posting.google.com>… > > Hi my name is Debby and my son has recently been diagnosed with Crest > > Syndrome. This is a scary thing and made worse by not knowing what to > > expect. I’ve read a lot of info on the disease but rarely if ever see > > a time-line of any kind mentioned. While I do know it’s a diverse > > disease affecting everyone differently, there must be more info > > regarding what and when to expect certain symptoms. Right now all he > > has is Raynauds but it’s pretty bad with ulcers and extreme > > sensitivity. Is there any help out there? I would so appreciate any > > info that can be given. David, my son, is 30 years old, if that makes > > any difference at all. > > Thank you all for reading my post. I hope you are having a good day! > > Blessings on each and everyone one! Debby > I know that when I was first diagnosed in 1997, I read everything I > could get my hands on, in the reference room in the library, the > library at the local hospital (I was living in Northwest Missouri at > the time; I now live in Southern New Jersery), on the internet and in > this newsgroup. Everybody has given you great advice and references. > Have your son make a list of questions, no matter how "dumb" they may > seem. The only stupid question is the one not asked. > Scleroderma seems to "hit" folks in their prime (I was 48 in 1997) and > at 30, although most of the victims tend to be female, he’s right at > the age it strikes. > Take care and my best wishes for his treatment and your and his > comfort (physical and spiritual). > Nell
Response:
Roger – Has your wife seen a scleroderma specialist? Amie
Response:
Thank you, Amelia for taking the time to write this. I’ll follow the links you suggest and learn as much as possible. Thanks for caring and God’s blessing on us all! Debby – Hide quoted text — Show quoted text -Amelia Yaussy <ayau…@forcemail.com> wrote in message <news:3E515DA1.1020205@forcemail.com>… > Debby wrote: > > There seems to be a lot of information on the web, but then > > again…there isn’t. Nothing concrete, that is. I realize that the > > disease is different with different folks but that doesn’t really give > > you any guide lines at all. For instance, does it become active once > > the first symptoms appear? > The disease can take different courses. Since your son has Limited, > it’s likely that this has been progressing slowly for years. It’s not > whether it’s "active" so much as what’s involved this month. As for > guidelines, there _is_ good info on the web for dealing with the > different symptoms and when to call the doc about something new, how to > find a doc who specializes in the disease, etc. What you can’t find > immediately, you can call the Scleroderma Foundation for – 1-800-722-HOPE > >Or can it just disappear for years? > Some people claim they have enjoyed actual remission (no symptoms.) > > Will he > > be sick within the next six months, what? > That’s hard to say. He really should be assessed by a specialist. > http://scleroderma.org/medical/centers.htm > > These are the hardest > > questions and there seems to be no answers available. > True. We live with the uncertainty of this every day, but we go on. > http://www.bayareasclero.org/checklist.htm > http://www1.shore.net/~dmoisan/invisible_disability.html > http://www.scleroderma.org/copingtips/copingarchive.htm > > Right now all he > > has is the Raynauds and high blood pressure, thank goodness. > Both of which are really important to keep in control. > http://health.yahoo.com/health/encyclopedia/000412/0.html > Sudden high blood pressure can indicate kidney involvement. If his BP > has risen from normal suddenly, his doc should check for kidney > dysfunction symptoms. ACE inihibitors are very successful at > controlling this complication. > http://www.annals.org/issues/v133n8/nts/200010170-00005.html > > But he is > > a young man and as with most young people he has plans for the future. > > He’s engaged but unsure as how to follow through. > It will take time, but he will learn how to accomodate the ups and downs > of the disease. Hopefully, he’ll join a support group and get some > guidance from people who already have the disease. He and his fiancee > might both benefit from it, and it could help them decide how to proceed. > > He works a hard job, > > road construction, how long will he be able to work? > He’ll be able to judge that as necessary. In the meantime, there’s no > harm in taking some courses from the local Builders Exchange in > estimating or superintending. No harm even if he _didn’t_ have > scleroderma. They’d provide an opportunity for growth in the industry > and away from the exposure to cold and physical exertion. > > His life seems to > > be in limbo right now without at least a tenative outlook. Although he > > continues as though nothing is wrong. > We all cope using a certain amount of denial, otherwise it would be hard > to get up in the morning. Through counseling or support groups (or > both) he could learn to balance this. > > He has a positive attitude and I > > know that means a lot when you’re fighting disease. > Absolutely the first ingredient needed to get on with life. > Check out the video "Living Well with Scleroderma" at the SF site – you > may even want to order it for your son and his fiancee. > http://scleroderma.org/LiveWell.html > Dr Maureen Mayes wrote "The Scleroderma Book" a few years ago and it has > great info: > http://www.amazon.com/exec/obidos/tg/detail/-/0195115074/qid=10455196…
Response:
Debby wrote: > Thanks Eleanor, > I think I’ve read all I can for a few days. This really takes a toll > emotionally, so in order not to fall apart I think I need to quit > reading for a while. Everyone seems so strong on this forum, I feel > very weak by comparison. Still not quite willing to believe…not > totally anyway.
Debby, we’re not so strong; we’ve just had more time to get used to things. Denial is part of us human’s way of getting used to things. Anger too. Acceptance will come with time, and with it you can find peace. dave
Response:
Debbie, It is very important for you and your son to read as much information as you possibly can. Here are a couple of sites to get you started. Bobbie R. http://www.sclero.org/ http://groups.yahoo.com/group/sclerodermasupport2/ http://www.srfcure.org/sclerod/index.html
Response:
My wife was diagnosed with scleroderma two years ago. She has grown progressively weaker since then, lost 25 lbs, and has pain all over her body. Her skin has thickened all over her body, and her skin develops rashes easily. She seems to have stabilized over last six months – at least she does not seem to be any weaker. She has difficutly walking and is taking Voltran and Nexium. So far none of her internal organs seem to be affected, but externally she has been affected a lot. We have two young children – 7 and 10 years old, and I am struggling with how to plan for the future. She does not want me to ask our doctor about future prognosis – it depresses her. Our doctor also wants us to be optimistic. I want to be optimistic too but I wish I knew what to expect so that I could plan for the future. I would like to hear what is a realistic prognosis at this point. I realize there is a range of possibilities. Is there any correlation between external and internal disorder? What is the life expectancy in such a situation? What sort of care should I prepare myself for? Where can I get such information? Thanks for all your support. I admire the courage of everybody in this group. Roger
Response:
jimchast…@msn.com (Debby) wrote in message <news:ae891012.0302110929.56c802fb@posting.google.com>… > Hi my name is Debby and my son has recently been diagnosed with Crest > Syndrome. This is a scary thing and made worse by not knowing what to > expect. I’ve read a lot of info on the disease but rarely if ever see > a time-line of any kind mentioned. While I do know it’s a diverse > disease affecting everyone differently, there must be more info > regarding what and when to expect certain symptoms. Right now all he > has is Raynauds but it’s pretty bad with ulcers and extreme > sensitivity. Is there any help out there? I would so appreciate any > info that can be given. David, my son, is 30 years old, if that makes > any difference at all. > Thank you all for reading my post. I hope you are having a good day! > Blessings on each and everyone one! Debby
I know that when I was first diagnosed in 1997, I read everything I could get my hands on, in the reference room in the library, the library at the local hospital (I was living in Northwest Missouri at the time; I now live in Southern New Jersery), on the internet and in this newsgroup. Everybody has given you great advice and references. Have your son make a list of questions, no matter how "dumb" they may seem. The only stupid question is the one not asked. Scleroderma seems to "hit" folks in their prime (I was 48 in 1997) and at 30, although most of the victims tend to be female, he’s right at the age it strikes. Take care and my best wishes for his treatment and your and his comfort (physical and spiritual). Nell
Response:
Debby wrote: > There seems to be a lot of information on the web, but then > again…there isn’t. Nothing concrete, that is. I realize that the > disease is different with different folks but that doesn’t really give > you any guide lines at all. For instance, does it become active once > the first symptoms appear?
The disease can take different courses. Since your son has Limited, it’s likely that this has been progressing slowly for years. It’s not whether it’s "active" so much as what’s involved this month. As for guidelines, there _is_ good info on the web for dealing with the different symptoms and when to call the doc about something new, how to find a doc who specializes in the disease, etc. What you can’t find immediately, you can call the Scleroderma Foundation for – 1-800-722-HOPE >Or can it just disappear for years?
Some people claim they have enjoyed actual remission (no symptoms.) > Will he > be sick within the next six months, what?
That’s hard to say. He really should be assessed by a specialist. http://scleroderma.org/medical/centers.htm > These are the hardest > questions and there seems to be no answers available.
True. We live with the uncertainty of this every day, but we go on. http://www.bayareasclero.org/checklist.htm http://www1.shore.net/~dmoisan/invisible_disability.html http://www.scleroderma.org/copingtips/copingarchive.htm > Right now all he > has is the Raynauds and high blood pressure, thank goodness.
Both of which are really important to keep in control. http://health.yahoo.com/health/encyclopedia/000412/0.html Sudden high blood pressure can indicate kidney involvement. If his BP has risen from normal suddenly, his doc should check for kidney dysfunction symptoms. ACE inihibitors are very successful at controlling this complication. http://www.annals.org/issues/v133n8/nts/200010170-00005.html > But he is > a young man and as with most young people he has plans for the future. > He’s engaged but unsure as how to follow through.
It will take time, but he will learn how to accomodate the ups and downs of the disease. Hopefully, he’ll join a support group and get some guidance from people who already have the disease. He and his fiancee might both benefit from it, and it could help them decide how to proceed. > He works a hard job, > road construction, how long will he be able to work?
He’ll be able to judge that as necessary. In the meantime, there’s no harm in taking some courses from the local Builders Exchange in estimating or superintending. No harm even if he _didn’t_ have scleroderma. They’d provide an opportunity for growth in the industry and away from the exposure to cold and physical exertion. > His life seems to > be in limbo right now without at least a tenative outlook. Although he > continues as though nothing is wrong.
We all cope using a certain amount of denial, otherwise it would be hard to get up in the morning. Through counseling or support groups (or both) he could learn to balance this. > He has a positive attitude and I > know that means a lot when you’re fighting disease.
Absolutely the first ingredient needed to get on with life. Check out the video "Living Well with Scleroderma" at the SF site – you may even want to order it for your son and his fiancee. http://scleroderma.org/LiveWell.html Dr Maureen Mayes wrote "The Scleroderma Book" a few years ago and it has great info: http://www.amazon.com/exec/obidos/tg/detail/-/0195115074/qid=10455196…
Response:
Debby, I was just diagnosed in October and I have all the same questions you have for your son. Certainly, fear of the unknown is probably just as hard to deal with as the symptoms themselves. I have found it helpful to learn about other people who have similar symptoms to me, who are still alive and doing well after some years. Granted, this disease is so individual, it may not apply to me, but at least I know that everybody isn’t dying after two years or five years or whatever. I have limited SD like your son. Pulmonary hypertension is more of a risk for people with limited or CREST type SD. Since your son already has elevated BP, that is something to keep an eye on. I have my own BP monitor to take mine every day and it eases my mind to know that everything is ok. If your son doesn’t have one at home, you might want to get one for him Amie gave you a lot of links and they will lead you to still others. A lot of reading that may seem awfully technical, but once you become familiar with some of the terms, it begins to make more sense. You will probably have questions. Bring them back here where I’m sure someone will have some answers or point you to where you can get them. Eleanor
Response:
Thanks Eleanor, I think I’ve read all I can for a few days. This really takes a toll emotionally, so in order not to fall apart I think I need to quit reading for a while. Everyone seems so strong on this forum, I feel very weak by comparison. Still not quite willing to believe…not totally anyway. But I feel there are answers available here and certainly many caring people to help each other through. We do have a BP monitor at home and will be using it regularly. Thanks for the suggestion. I feel the more we can take care of ourselves the better. I hope this is a good day for all. God’s Blessings on each and everyone!!! Debby C – Hide quoted text — Show quoted text -elebourd <elebo…@direct.ca> wrote in message <news:3E52C747.EC5FCE43@direct.ca>… > Debby, I was just diagnosed in October and I have all the same questions > you have for your son. Certainly, fear of the unknown is probably just > as hard to deal with as the symptoms themselves. I have found it helpful > to learn about other people who have similar symptoms to me, who are > still alive and doing well after some years. Granted, this disease is so > individual, it may not apply to me, but at least I know that everybody > isn’t dying after two years or five years or whatever. > I have limited SD like your son. Pulmonary hypertension is more of a > risk for people with limited or CREST type SD. Since your son already > has elevated BP, that is something to keep an eye on. I have my own BP > monitor to take mine every day and it eases my mind to know that > everything is ok. If your son doesn’t have one at home, you might want > to get one for him > Amie gave you a lot of links and they will lead you to still others. A > lot of reading that may seem awfully technical, but once you become > familiar with some of the terms, it begins to make more sense. You will > probably have questions. Bring them back here where I’m sure someone > will have some answers or point you to where you can get them. > Eleanor
Response:
Well said, Eleanor. One correction: elevated pulmonary artery pressure isn’t detectable using a blood pressure cuff. A pulmonary function test along with an echocardiogram is helpful in diagnosing PHT. Many of us have yearly echos and PFTs. http://www.actelion.com/Apps/WebObjects/Actelion.woa/wa/dp?name=patie… It is highly advisable to check your BP regularly, though! I was very lax about this and just happened to have a sinus infection and be going to the doc when my BP shot up like a rocket in Jan. 2000. A sudden, severe increase in BP is a prime symptom of scleroderma kidney problems, exactly what I was having. Ask your doc how often you should check your BP and what range it should stay in. Kidney complications used to be the number one killer in scleroderma, but with the development of ACE inhibitor drugs, the complication is very controllable now (THANK YOU researchers David W. Cushman, PhD, and Miguel A. Ondetti, PhD!) – Hide quoted text — Show quoted text -elebourd wrote: > Debby, I was just diagnosed in October and I have all the same questions > you have for your son. Certainly, fear of the unknown is probably just > as hard to deal with as the symptoms themselves. I have found it helpful > to learn about other people who have similar symptoms to me, who are > still alive and doing well after some years. Granted, this disease is so > individual, it may not apply to me, but at least I know that everybody > isn’t dying after two years or five years or whatever. > I have limited SD like your son. Pulmonary hypertension is more of a > risk for people with limited or CREST type SD. Since your son already > has elevated BP, that is something to keep an eye on. I have my own BP > monitor to take mine every day and it eases my mind to know that > everything is ok. If your son doesn’t have one at home, you might want > to get one for him > Amie gave you a lot of links and they will lead you to still others. A > lot of reading that may seem awfully technical, but once you become > familiar with some of the terms, it begins to make more sense. You will > probably have questions. Bring them back here where I’m sure someone > will have some answers or point you to where you can get them. > Eleanor
Response:
Amelia Yaussy <ayau…@forcemail.com> wrote in message <news:3E5444EA.7040802@forcemail.com>… > Roger – > Has your wife seen a scleroderma specialist? > Amie
My wife is seeing a Rhuematologist, but she does not want to see any other specialist. She is a microbiologist. I believe she got the illness in part because of the exposure to various chemicals in her lab. At any rate, she knows about the toxicity of various medicines and so she wants to take as little of them as possible. She is seeing someone in herbal medicine, which she believes in, and is getting herbal massages. She sees some benefit from the herbal treatment. She seems to believe that the herbal treatment will cure her. I am skeptical. My knowledge is derived from reading various web sites. She gets very angry when I say (to her or the children) anything that suggests that this desease is progressive or incurable. (I do not bring this up, but sometimes in a conversation I might say something that suggests this.) I feel that she is in denial. But I have let her do what she wants and have not pressed her in any way. She is a very strong willed person. I feel that, whatever may be my views, I should be supportive of her. I also do not see value in pressing her to change her treatment, since nothing I see on the web gives any hope that any other treatment will do much better. The Rhuematologist has suggested that she consider joining various expertimental treatment protocols. But my wife has turned her down. It is painful to watch her struggle with this desease. She is suffering a lot. Roger
Response:
Wow! What a wealth of information-good job Amie. "Amelia Yaussy" <ayau…@forcemail.com> wrote in message
news:3E515DA1.1020205@forcemail.com… – Hide quoted text — Show quoted text -> Debby wrote: > > There seems to be a lot of information on the web, but then > > again…there isn’t. Nothing concrete, that is. I realize that the > > disease is different with different folks but that doesn’t really give > > you any guide lines at all. For instance, does it become active once > > the first symptoms appear? > The disease can take different courses. Since your son has Limited, > it’s likely that this has been progressing slowly for years. It’s not > whether it’s "active" so much as what’s involved this month. As for > guidelines, there _is_ good info on the web for dealing with the > different symptoms and when to call the doc about something new, how to > find a doc who specializes in the disease, etc. What you can’t find > immediately, you can call the Scleroderma Foundation for – 1-800-722-HOPE > >Or can it just disappear for years? > Some people claim they have enjoyed actual remission (no symptoms.) > > Will he > > be sick within the next six months, what? > That’s hard to say. He really should be assessed by a specialist. > http://scleroderma.org/medical/centers.htm > > These are the hardest > > questions and there seems to be no answers available. > True. We live with the uncertainty of this every day, but we go on. > http://www.bayareasclero.org/checklist.htm > http://www1.shore.net/~dmoisan/invisible_disability.html > http://www.scleroderma.org/copingtips/copingarchive.htm > > Right now all he > > has is the Raynauds and high blood pressure, thank goodness. > Both of which are really important to keep in control. > http://health.yahoo.com/health/encyclopedia/000412/0.html > Sudden high blood pressure can indicate kidney involvement. If his BP > has risen from normal suddenly, his doc should check for kidney > dysfunction symptoms. ACE inihibitors are very successful at > controlling this complication. > http://www.annals.org/issues/v133n8/nts/200010170-00005.html > > But he is > > a young man and as with most young people he has plans for the future. > > He’s engaged but unsure as how to follow through. > It will take time, but he will learn how to accomodate the ups and downs > of the disease. Hopefully, he’ll join a support group and get some > guidance from people who already have the disease. He and his fiancee > might both benefit from it, and it could help them decide how to proceed. > > He works a hard job, > > road construction, how long will he be able to work? > He’ll be able to judge that as necessary. In the meantime, there’s no > harm in taking some courses from the local Builders Exchange in > estimating or superintending. No harm even if he _didn’t_ have > scleroderma. They’d provide an opportunity for growth in the industry > and away from the exposure to cold and physical exertion. > > His life seems to > > be in limbo right now without at least a tenative outlook. Although he > > continues as though nothing is wrong. > We all cope using a certain amount of denial, otherwise it would be hard > to get up in the morning. Through counseling or support groups (or > both) he could learn to balance this. > > He has a positive attitude and I > > know that means a lot when you’re fighting disease. > Absolutely the first ingredient needed to get on with life. > Check out the video "Living Well with Scleroderma" at the SF site – you > may even want to order it for your son and his fiancee. > http://scleroderma.org/LiveWell.html > Dr Maureen Mayes wrote "The Scleroderma Book" a few years ago and it has > great info:
http://www.amazon.com/exec/obidos/tg/detail/-/0195115074/qid=10455196… -2/ref=sr_8_2/103-9248826-0361404?v=glance&s=books&n=507846 – Hide quoted text — Show quoted text –
Response:
Hi my name is Debby and my son has recently been diagnosed with Crest Syndrome. This is a scary thing and made worse by not knowing what to expect. I’ve read a lot of info on the disease but rarely if ever see a time-line of any kind mentioned. While I do know it’s a diverse disease affecting everyone differently, there must be more info regarding what and when to expect certain symptoms. Right now all he has is Raynauds but it’s pretty bad with ulcers and extreme sensitivity. Is there any help out there? I would so appreciate any info that can be given. David, my son, is 30 years old, if that makes any difference at all. Thank you all for reading my post. I hope you are having a good day! Blessings on each and everyone one! Debby
Response:
Debbie , Well if we have to have this disease I do believe crest is the better type to have I have a form of crest and usually we fair pretty well with the disease. We usually have slow onset of symptoms . Many treatments when started early on in this disease are more effective . I hope he is seeing a good rheumatologist . Also have him look into antibiotic therapy . There are good web sites that have more info about this protocol at http://www.rheuamtic.org and http://www.rheumaticsolutions.org both sites have other SD patients on this therapy and many are doing quite well its a benign safe therapy too might be a good place to start and if conventional therapies are needed it usually can be used with them to and may shorten the length of time needed on the harsher drugs. Those sites are free and sell nothing . There are message boards so you can post to others as well . Feel free to email me any questions or concerns and Ill try and help . Warm regards, socjog "Debby" <jimchast…@msn.com> wrote in message
news:ae891012.0302110929.56c802fb@posting.google.com… – Hide quoted text — Show quoted text -> Hi my name is Debby and my son has recently been diagnosed with Crest > Syndrome. This is a scary thing and made worse by not knowing what to > expect. I’ve read a lot of info on the disease but rarely if ever see > a time-line of any kind mentioned. While I do know it’s a diverse > disease affecting everyone differently, there must be more info > regarding what and when to expect certain symptoms. Right now all he > has is Raynauds but it’s pretty bad with ulcers and extreme > sensitivity. Is there any help out there? I would so appreciate any > info that can be given. David, my son, is 30 years old, if that makes > any difference at all. > Thank you all for reading my post. I hope you are having a good day! > Blessings on each and everyone one! Debby
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