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janey

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Posts posted by janey


  1. EVOXAC Efficacy and Clinical Studies.

     

    EVOXAC is a cholinergic agonist which binds to muscarinic receptors and significantly improves salivary flow for patients suffering from dry mouth associated with Sjögren's syndrome. Nine clinical trials have shown EVOXAC to be both safe and effective. Evoxac. April, 2011. (Also see: Sjogrens)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  2. The nonprofit International Scleroderma Network thanks Rebekah Bell for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/23/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  3. The nonprofit International Scleroderma Network thanks Bruce Bochard for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/23/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  4. tngrits,

    So sorry to read what you are having to deal with by having this nasty disease! Like Jeannie I'm on Bosentan. It is an oral drug used to treat class 2, 3, and 4 PAH and seems to be working quite well so far. I did a little internet search and it sounds like the meds you are taking might be Remodulin? It says that it can be taken subcutaneous as well as intravenous. Whatever the med is I hope it helps you to get better.

    My recommendation is - since you're being held captive for the time being - find some good books and catch up on your reading. I find a good book a great escape.

    We're always here for you.


  5. The nonprofit International Scleroderma Network thanks Christine Fonseca for raising scleroderma awareness through the purchase of Voices of Scleroderma book series (volumes 1-3), which is based on the hundreds of stories posted on the sclero.org website. (Also see: Donate or Shop Now) Posted 04/26/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  6. The nonprofit International Scleroderma Network thanks Lauren Kolowitz for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/23/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  7. The nonprofit International Scleroderma Network thanks Kelsey Magerman for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/23/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  8. Gut Bacteria Falls Into Three Major Types.

     

    European researchers have determined that there are three distinct types of microscopic ecosystems that exist in the human intestine. What differentiates each type is which species of microbes are present and which are the most abundant, researchers said. Jenifer Goodwin. (HealthDay) Yahoo News. 04/21/11.

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  9. The nonprofit International Scleroderma Network thanks Jeri Knight for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/23/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  10. We heartily thank Simone Rosenblum for her donation to tackle scleroderma this holiday season, in loving memory of Maxine Gail Mackler. The International Scleroderma Network (SCLERO.ORG) is a full-service nonprofit agency. We rely on volunteers as much as possible to give donations the absolute maximum impact for scleroderma. We all desperately need more research, support, education and awareness for scleroderma and related illnesses. Please help us tackle scleroderma by donating now! 04/23/11. (Also see: Sclero Shop/Donate)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  11. An invitation to MJ's Kitchen.

     

    I'd like to invite you all to my new website in which I will be publishing many of the recipes that I have developed over the years. Many of the recipes you'll see were developed after I got sick back in 2002. As you all can relate, it became so hard to cook or even want to cook. But because cooking is one of my passions, I have been able to get the energy to return to the kitchen. The recipes you find are EASY, healthy and can be made using basic ingredients. I try to keep the whole prep and cooking time to less than an hour and many times - 30 minutes.

     

    I hope you take a moment to check it out and possibly even try out some of the recipes. If you do try out a recipe and find something that looks interesting, please let me know. My plan is to publish a new recipe every Wednesday. I hope you enjoy what you see.


  12. Health Hero: Kelly Pleas.

     

    Kelly faced the difficult diagnosis of diffuse systemic scleroderma-while going through a divorce and raising two young boys. There were decisions she had to make, and one critical step guided her in the right direction. Quality Health. April, 2011. (Also see: Serena Justis)

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  13. The nonprofit International Scleroderma Network thanks Rachel Schultz for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/22/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  14. The nonprofit International Scleroderma Network thanks Linda Trexler for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/17/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  15. The nonprofit International Scleroderma Network thanks Amy Clark for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/21/11.

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  16. There is a phishing scam going on now which targets scleroderma patients, posing as the Scleroderma Family and DNA Registry. The scam sends users to a fake site, sclerodermaregistry.com, and asks them to enter their private data. Contact Marilyn Perry by email, [email protected], for any questions regarding the registry or scam. Posted 04/21/11. (Also see: Scleroderma Family and DNA Registry)

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  17. Marsha,

    Welcome Darlin! I'm so glad that you felt comfortable enough to register and post your concerns about having connective disease tissue (CTD). There are so many people in the same situation as you or who have been that situation. CTD is a very hard thing to diagnosis. Since Lupus, Scleroderma, Rheumatoid Arthritis and Poly/Dermatomyositis are all CTD they sometime exhibit similar symptoms making diagnosis difficult. APS being another autoimmune that can also exhibit similar symptoms as CTD. Unfortunately, there is no one single test for any of these diseases that allows us to know for sure. My blood work is negative for scleroderma but positive for mixed CTD but I didn't find that out until about 4 years after diagnosis with polymyositis and systemic scleroderma. My diagnosis was made based strictly on my symptoms.

     

    So I would suggest that you do what I did and start making a list of ALL of your symptoms even those that you don't think might be related to autoimmune. I went in with a 3 page history which made diagnosis really easy for the rheumatologist; however, he did do a nailfold capillaroscopy test right there in his office and afterward, said Yep - you have scleroderma. I don't have skin involvement so it's not that apparent.

     

    There is obviously something going on with you, so I would continue to seek out answers. Have you been to a rheumatologist? There are the best specialists for CTD. Please seek on out if you haven't seen one. In the meantime, please reduce your stress level as much as possible. I know that's easier said than done, but stress can worsen any disease. In between doctor appointments, do things you enjoy. Try not to deal on the symptoms and possible causes. Just be sure to communicate EVERYTHING to your doctors. The more they know the easier it is for them to reach a diagnosis.

     

    Please keep us informed on how you are doing and any doctor appointments. We are here for you darlin.


  18. Autoimmune Diseases Number Two Cause of Chronic Illness.

     

    The report estimates that 50 million Americans have more than 100 autoimmune diseases, and 75 percent of those affected are women. Estimates of the costs incurred include direct and indirect health care and out-of-pocket patient expenses, as well as loss of earnings. In addition, unnecessary costs are incurred by delays in getting a diagnosis and starting treatment. (HealthDay News) MDNews.com. 04/02/11. (Also see: Autoimmunity)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  19. The nonprofit International Scleroderma Network thanks Robert Lipton for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/17/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  20. The nonprofit International Scleroderma Network thanks Bruce Bochard for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/17/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  21. The nonprofit International Scleroderma Network thanks Josh Caves for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/17/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.


  22. New Evidence that Chronic Ulcerative Stomatitis is an Autoimmune Disease.

     

    Chronic ulcerative stomatitis is characterized by painful, recurring sores in the mouth. Thus far, it has been diagnosed most frequently in white women in their 40's and 50's and may appear similar to oral erosive lichen planus. PRNewswire-USNewswire. 04/15/11. (Also see: Mouth Sores)

     

    This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


  23. The nonprofit International Scleroderma Network thanks Linda Doerflein for raising scleroderma awareness through the purchase of scleroderma awareness bracelets! Bracelets are $2.50 each with free shipping and handling. They say "scleroderma" on one side and "sclero.org" on the other. (Also see: Donate Now) Posted 04/16/11.

     

    These items were posted in the ISN Newsroom. Check the Newsroom every day for the latest scleroderma medical and support information.

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