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janey

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Posts posted by janey


  1. AARDA Launches New PSA Campaign in March for National Autoimmune Diseases Awareness Month.

     

    The American Autoimmune Related Diseases Association Inc. (AARDA) has unveiled a multi-media public service/awareness campaign titled "We are 50 Million" to herald March 2011 as National Autoimmune Diseases Awareness Month. The campaign is designed to educate the general public about the magnitude of autoimmune disease and its impact on patients, families and the U.S. health care system. PRNewswire. 02/02/11.

     

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


  2. Thyroid in Balance. Thyroid disorder has been found to be the most common endocrinal problem during pregnancy. Untreated, it can increase the risk of miscarriage, stillbirth or even premature birth, as well as high blood pressure in the mother. It may also affect the child's IQ and motor skills. Benita Sen. The Hindu Business Line. February, 2011. (Also see: Thyroid Disease)

     

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


  3. Caroline,

    I'm so glad to hear that your surgery went well and that your symptoms have subsided! We all rejoice in that Darling! Also sounds like you have a great bunch of friends. Sorry that your happiness in feeling better has been dampened by the lack of support from your family. So once all of the food runs out that your friends brought you, I see you fixing food just for you and let the rest of the family fend for themselves. :P We are superwomen, but eventually that heavy foot needs to hit the ground and make people take notice.

     

    I'm glad that you feel comfortable enough to come here and vent. We all have done it a time or two or three because we know we are talking to others who can relate better than anyone else. We're here for you Darlin!


  4. Rare Disease Day – Highlighting Scleroderma.

     

    The Raynaud's & Scleroderma Association (RSA), a national charity is using the occasion to highlight scleroderma, which affects approximately 8,000 people in the UK. The main objective is to raise awareness of rare diseases and the impact they have on patients' lives, amongst the general public and decision-makers. Wellington News. 02/23/11.

     

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


  5. The nonprofit International Scleroderma Network thanks Christine, Chrissy, Christina, Jane, Bob, Beth, David and Colleen for tackling scleroderma through their recent comprehensive donation for research, support, education and awareness, in loving memory of Paula McCormack. (Also see: Donate Now) Posted 02/25/11.

     

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


  6. Kiwi,

    Isn't is wonderful being able to talk to someone with experience in a drug! Jo - I'm thrilled that Azathioprine (Imuran) has helped you. From the two studies listed here on ISN it does appear that Azathioprine as a maintenance drug after cyclophosphamide (CYC) has proven to be effective. However, as a drug by itself in the treatment of scleroderma lung, the results of one study were not good. So please read both the studies in the link provided and discuss these with your doctor. I was on Azathioprine for 3 weeks and couldn't tolerate it; however, for many it is apparently a very tolerable drug.

     

    I'm sorry to hear that your lungs are worsening and because of that it is definitely a MUST to try to stop it! When my lungs started to worsen I was put on Imuran, then oral CYC but couldn't tolerate either. After researching other options, I convinced my doctors to try Cellcept. I took in the little, but positive research that has been done with it and they agreed to try it. That was 4 years ago and my lungs are stable and I am now slowing come off the cellcept. So that's another option you might discuss with your doctor.

     

    Hope you find something that works for you! Let's us know what you decide and how you are doing.


  7. Scientists Identify New Genetic Region Associated with Scleroderma.

     

    New research has identified a new genetic link to systemic sclerosis (also known as systemic scleroderma) and confirmed three previously discovered links to the disease, which can cause thickening of the skin, narrowing of blood vessels and scarring of internal organs. January 2011. NIAMS. (Also see: Causes of Scleroderma - Genetics)

     

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


  8. Peggy,

    It's so good to hear from you and to hear that you have found a solution to your neverending pain - although the long term solution sounds a little overwhelming. But I guess we've got to do what we've got to do. With as much pain as you have, I can certainly understand the desire to get your life back. DUH! My sister has pain similar to what you describe. She doesn't have scleroderma, but has many problems that causes her constant pain. I think I'll pass this one on to her.

     

    Please let us know once you get the surgery scheduled. We want to keep track of how you are doing. Hopefully you'll have some residual effects from the trial and get a couple more painless days once they take the needles out.

     

    Congratulations on FINALLY finding some relief. Thanks for sharing with us.


  9. The nonprofit International Scleroderma Network thanks DeAnna Picazo 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 02/15/11.

     

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


  10. The management of pulmonary manifestations in scleroderma.

     

    Aggressive screening and specialist-care involvement are crucial for early detection of the pulmonary disease long before it is clinically apparent. Combined rheumatology/respiratory clinics have been shown to be an effective way of providing a streamlined approach to patient care, enabling potentially life-threatening pulmonary complications to be diagnosed early and treated. Dr. Fahd Adeeb. Irish Medical Times. 01/20/11. (Also see: Pulmonary Involvement)

     

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


  11. Study shows vitamin D deficiencies may impact onset of autoimmune lung disease.

     

    Researchers evaluated 118 patients. Overall, those with connective tissue disease-related Interstitial Lung Disease (ILD) were more likely to have vitamin D deficiency—52 percent versus 20 percent—and insufficiency—79 percent versus 31 percent—than other forms of ILD. Katie Pence, UCAHC. EurekAlert! 01/04/11. (Also see: Vitamin D deficiency and Pulmonary Fibrosis)

     

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


  12. The nonprofit International Scleroderma Network thanks Leah Zwer 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 02/12/11.

     

    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 Kristen Scala 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 02/11/11.

     

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


  14. 1 in 12 Women Will Have Autoimmune Disease.

     

    Researchers say the risk of developing an autoimmune disease depends on a number of factors, including age and gender, but until now there hasn’t been an easy-to-understand average risk over a person’s lifetime for adults in the U.S. Jennifer Warner. WebMD. 01/11/11. (Also see: Autoimmunity)

     

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


  15. Rick W: Morphea Scleroderma

    I was diagnosed with localized scleroderma by a dermatologist in 1999 at age thirty-three. It started out as what I thought was a small bruise on my abdomen and grew into a shape larger than a dollar bill... Posted 02/10/11.

    There are over 1,000 patient and caregiver stories on the main Sclero.org site. Over 300 of these stories are featured in the Voices of Scleroderma book series.


  16. The nonprofit International Scleroderma Network thanks Crowdrise for tackling scleroderma.

     

    An anonymous person began a Crowdrise Fundraiser for the ISN, and so far has raised over $1,000! Everyone is invited to join the Crowdrise excitement by donating to the ISN through the Crowdrise portal. Posted 02/10/11.

     

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


  17. Karen,

    It's so good to hear from you! However, I'm sorry to read about your breathing problems. There are so many things that can cause shortness of breath that it's hard to nail it down. Like you, I'm overweight for my size and my doctors keep telling me to lose weight. A couple of years ago my cardiologist actually started me on an exercise program at a rehab center. It was great! The technicians there helped me with a start up program and got me to a level that I'm comfortable with. The trick was to start off very, very slow. That was extremely hard from me since I use to be the one that everyone tried to keep up with, but it worked. My starting pace on the treadmill was 1.0 mile per hour!!! At first I could only do that for 10 minutes. Within 6 months I was up to 2.5 mph for 45 minutes 3 times a week. I did find that 45 minutes made my joints hurt at night, so now I just do 30 minutes 3 times a week and I have very little post-activity pain. On the other days, I do about 10 minutes on a stationary bike that I have at the house.

     

    So I would suggest if your doctors want you to lose weight, then ask one of them to help you with an exercise program through a rehab facility. I didn't lose as much weight as they wanted me to, but at least I'm not gaining anymore and I can handle the day-to-day chores and activities SO MUCH better. I love Jeannie's idea of keeping a log of what you eat and such. If I did that it would be extremely convincing since I eat a third of what my husband eats and I gain weight!

     

    Hope you feel better soon and please, don't be a stranger!

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