Scleroderma Information » Scleroderma » Can Scleroderma go into remission?
Question:
I HAVE A FRIEND WHO IS GETTING SOME GOOD RESULTS USING A PRODUCT CONTAINING NATURE’S RICHEST SOURCE OF "ALKYLGLYCEROL" WHICH PROVIDES DIETARY SUPPORT FOR THE IMMUNE SYSTEM. FLORI
Response:
Haven’t been able to find the Victoria group yet, but here’s another contact for support in BC: Scleroderma Assn Po Box 218 Stn Main Delta, BC 604-940-9343 – Hide quoted text — Show quoted text -AC900434 wrote in message <79099p$…@journal.concentric.net>… >If you are close to Victoria or Vancouver you have a number of options. >The teaching hospital in UBC is doing research on scleroderma, and there >used to be a fairly big scleroderma support group in Victoria. I couldn’t >find the URL for the Victoria support group, though . . . anybody????? >We live in BC, Canada, >>does anyone know of a specialist close by? >>Thanks, >>Dodie
Response:
Thank you Ronni for that wise word of caution. – Hide quoted text — Show quoted text -RSM USF wrote: > >I HAVE A FRIEND WHO IS GETTING SOME GOOD RESULTS USING A PRODUCT CONTAINING > >NATURE’S RICHEST SOURCE OF "ALKYLGLYCEROL" WHICH PROVIDES DIETARY SUPPORT > >FOR > >THE IMMUNE SYSTEM. > >FLORI > I’m not familiar with this, but just a note of caution about vitamins, > minerals and dietary aids that boost the immune system. They may be > contraindicated for scleroderma, a disease in which the immune system is > overactive. Things like echinacea, for example, which are recommended for many > people, are NOT recommended for those of us with scleroderma (so we’ve been > told by some scleroderma specialists). Even though these may seem harmless, > please check with your doctors before taking them. > -Ronni- > *********************************** > Building Awareness for Scleroderma > Is Crucial to Finding a Cure > Scleroderma Foundation (1/800-722-HOPE)
– We Are Raising Awareness of Scleroderma Providing Support, Information and News Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com Scleroderma Foundation Greater Washington DC http://sclerodermagw.org "Together we can beat the odds!"
Response:
If you are close to Victoria or Vancouver you have a number of options. The teaching hospital in UBC is doing research on scleroderma, and there used to be a fairly big scleroderma support group in Victoria. I couldn’t find the URL for the Victoria support group, though . . . anybody????? We live in BC, Canada, – Hide quoted text — Show quoted text ->does anyone know of a specialist close by? >Thanks, >Dodie
Response:
> There are many >symptoms and many variations of the disease. > Scleroderma can stay localized affecting the outer skin or it can go >internal and this creates more severe difficulties.
Just a clarification here, so people aren’t confused. There ARE various types of scleroderma — but scleroderma is either localized or systemic (which includes "limited" scleroderma or CREST, and "diffuse" or "generalized" scleroderma). Localized scleroderma affects only the skin — and sometimes the underlying tissue — but it very rarely "goes internal." Sometimes systemic scleroderma APPEARS to affect only the skin, but then may involve internal organs later on — or the internal involvement may not be evident at the outset. I hope this is clear. People with localized scleroderma shouldn’t be unduly worried that they will develop the more serious systemic types of scleroderma. -Ronni- *********************************** Building Awareness for Scleroderma Is Crucial to Finding a Cure Scleroderma Foundation (1/800-722-HOPE)
Response:
Hi Dodie, Having read your posting, you have more questions than I am qualified to even try and offer an answer to. I do have this for your consideration though. I manage an on line web site for the Evergreen Chapter of the Scleroderma Foundation. Our link is http://members.aol.com/EvrgrnSpt On our web site are Seattle research sites, treatment options, and additional information. We often have people come from all over the Pacific Northwest as this is a Major research site area. Our chapter is fortunate to have Dr. Daniel Furst as our Medical advisor. Dr. Furst is one of the leading researchers in the world and also maintains a clinical practice at Virginia Mason Medical Center here in Seattle. I will look to see if we have any links for BC, and if we do, I will send them along. Hope this helps. Don Don & Brandy http://members.aol.com/Evrgrnspt "A dog never pretends to be something they are not"
Response:
Dodie,: Many people can have virtual no symptoms for many years, in others, it can be more severe. My sister has a severe type. She has had it 9 years. There are many symptoms and many variations of the disease. She needs to see a specialist in scleroderma; it is often misdiagnosed by doctors unfamiliar with the signs. Scleroderma can stay localized affecting the outer skin or it can go internal and this creates more severe difficulties. Insist that she see a specialist in this field if she has socialized medicine; a local GP, and this is my own personal opinion, is not necessarily up-to-date on the latest and greatest treatments and research going on. Plus, it needs an expert to diagnosis exactly what form the slceroderma is taking. – Hide quoted text — Show quoted text -Dodie Manuel wrote in message <36B2B83B.A3EA7…@kootenaytrader.com>… >I posted just a few days ago about my sister having Scleroderma. My new >question is "Is it normal for it to go away for several years before >returning?" It stopped spreading on her arm for approx. six years before >spreading again. Six years ago it was 10cm x 9cm, now it is 32cm x 19cm. >The only symptoms she has had is hardening of the skin on one arm. She >is going in to get a test to see if she has an ulcer, is this another >symptom? It is terrible that she is almost 16. We live in BC, Canada, >does anyone know of a specialist close by? >Thanks, >Dodie
Response:
Hi Dodie. Many people do go through periods where they appear almost symptom free or their symptoms are better controlled. For some it never progresses again and for others it will. In a sense the answer to your question is yes. You will find this newsgroup a great place for you to post your concerns and questions. Welcome — We Are Raising Awareness of Scleroderma Providing Support, Information and News Sherry Messick, Surviving Scleroderma http://SclerodermaSupport.com Scleroderma Foundation Greater Washington DC http://SclerodermaSupport.com/SFWashDC "We are all Beacons Of Light for Each Other" Oprah Winfrey – Hide quoted text — Show quoted text -> Dodie Manuel wrote in message <36B2B83B.A3EA7…@kootenaytrader.com>… > >I posted just a few days ago about my sister having Scleroderma. My new > >question is "Is it normal for it to go away for several years before > >returning?" It stopped spreading on her arm for approx. six years before > >spreading again. Six years ago it was 10cm x 9cm, now it is 32cm x 19cm. > >The only symptoms she has had is hardening of the skin on one arm. She > >is going in to get a test to see if she has an ulcer, is this another > >symptom? It is terrible that she is almost 16. We live in BC, Canada, > >does anyone know of a specialist close by? > >Thanks, > >Dodie
Response:
I posted just a few days ago about my sister having Scleroderma. My new question is "Is it normal for it to go away for several years before returning?" It stopped spreading on her arm for approx. six years before spreading again. Six years ago it was 10cm x 9cm, now it is 32cm x 19cm. The only symptoms she has had is hardening of the skin on one arm. She is going in to get a test to see if she has an ulcer, is this another symptom? It is terrible that she is almost 16. We live in BC, Canada, does anyone know of a specialist close by? Thanks, Dodie
Response:
>I HAVE A FRIEND WHO IS GETTING SOME GOOD RESULTS USING A PRODUCT CONTAINING >NATURE’S RICHEST SOURCE OF "ALKYLGLYCEROL" WHICH PROVIDES DIETARY SUPPORT >FOR >THE IMMUNE SYSTEM. >FLORI
I’m not familiar with this, but just a note of caution about vitamins, minerals and dietary aids that boost the immune system. They may be contraindicated for scleroderma, a disease in which the immune system is overactive. Things like echinacea, for example, which are recommended for many people, are NOT recommended for those of us with scleroderma (so we’ve been told by some scleroderma specialists). Even though these may seem harmless, please check with your doctors before taking them. -Ronni- *********************************** Building Awareness for Scleroderma Is Crucial to Finding a Cure Scleroderma Foundation (1/800-722-HOPE)
Response:
This would be the "shark liver oil" supplement? Though I must admit I’ve never seen a shark with Scleroderma, I would like to see something more than "I HAVE A FRIEND WHO IS GETTING SOME GOOD RESULTS" – perhaps, some test findings you can point us to? I checked medline and saw nothing specific to Scleroderma or collagen disease or auto-immune disease and the use of this supplement. – Hide quoted text — Show quoted text -Wfpsd wrote in message <19990208222233.18589.00000…@ng-fy1.aol.com>… >I HAVE A FRIEND WHO IS GETTING SOME GOOD RESULTS USING A PRODUCT CONTAINING >NATURE’S RICHEST SOURCE OF "ALKYLGLYCEROL" WHICH PROVIDES DIETARY SUPPORT FOR >THE IMMUNE SYSTEM. >FLORI
no comment untill now