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  1. Today
  2. Improving overall heart health may reduce risk of atrial fibrillation. Following practices recommended for “optimal” heart health may also reduce the risk of developing a serious heart–rhythm disorder, researchers say. Reuters Health, 04/19/2018. (Also see Heart Complications) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Scleroderma Hotline and Email Support Specialists are eager to help people affected by scleroderma and related illnesses, such as pulmonary hypertension. Simply email [email protected] or call our Hotline at 1-800-564-7099. Ask for your free information packet. Posted 05/26/2018.
  4. Hi Kamlesh, I've never tried a gluten or dairy free diet, so can't advise you from my own experience, but I've included a link to our medical pages on Celiac Disease and Gluten Sensitivity and Diet and Systemic Scleroderma to give you some more information. Systemic scleroderma patients should always consult their doctor(s), especially their rheumatologist, before using any vitamin or herbal remedies or making any significant changes in their diet. We also have some personal stories about Gluten Sensitivity in our Patient and Caregiver Stories, which I'm hoping you'll find interesting. Kind regards,
  5. To add little more: I do not have crohn or Celiac diseases, however I have Scleroderma which is impacting internal organs. Having said this, any opinion on Gluten and/or dairy free diet. I am trying Gluten free diet for six weeks without any noticeable improvements. I am vegetarian and have been follow Gluten free diet most of the time except few times tiny portion of wheat included in other gluten free items.
  6. Yesterday
  7. Joelf

    Hello, from a new member.

    Hi Ann, Welcome to these Forums! I do hope you will enjoy being a member of our community and will gain from the advice and support of our members. I've included a link to the medical pages on our main website, which I hope you'll find helpful and informative and please do continue to post any questions you may have regarding this very bizarre disease. Kind regards,
  8. Unfortunately, I posted first on the help desk and created an account and read guidelines next. I'm pretty sure I was within guidelines, but can't remember exactly what I wrote. Although I am still employed, even in 2018, I really don't love technology, but am very impressed with what I see as the computer expertise on this site. I wanted to apologize for posting before reading. I am also still slightly skeptical about websites in general, even this one, but am willing to check it out and get some advice. I get enough spam phone calls to make me slightly leery of sales pitches. Thanks for your support. I have already read things that I can identify with. I am here to learn from the experience of others.
  9. Metabolic syndrome (MetS) in patients with systemic lupus erythematosus: Association with disease activity, disease damage and age. The frequency of MetS was not significantly different from that of the control group, but almost half of the patients were found with this syndrome. PubMed, Int J rheumatologist Dis, 04/03/2018. (Also see Symptoms and Complications of Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Margaret

    My biggest fear.

    Hi everyone - at first, I felt I didn't need to respond to this thread but Heather's post got me rethinking. Heather - I totally understand your fear of dying before your daughter, as it is my biggest fear, too. Gareth is the reason I joined this site back in 2008, when he was first diagnosed with UCTD and very ill. Gareth has Down's syndrome and autism, besides a host of medical issues that keeps me on my toes. No one, but me (MOM) , can care enough for him or understand his speech/ feelings/pain/etc. I've always joked that I am ready to die any day - as long as Gareth is with me. He did move into a group home several years ago (his choice) but to this day, I still take charge of all doctor appointments and medical issues. If he's hurting or feeling off, he calls me to come get him!! Staff is totally supportive and understands. Sometimes, he *milks it* for all it's worth, but I don't mind. Take care, everyone, Margaret Mom to Gareth, 30 years old, DS/ASD
  11. Hello Friends, I do not have crohn or Celiac diseases, however I have Scleroderma which is impacting internal organs. Having said this, any opinion on Gluten and/or dairy free diet. I have tried Gluten free diet for six weeks without any noticeable improvements.
  12. Last week
  13. Dental Hygiene Practices to Maintain a Healthy Mouth. The very first step in the digestion process begins in the mouth and for someone with scleroderma, simply chewing food can be exhausting. Scleroderma News, 03/29/2018. (Also see Dental Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Tooth loss in middle age linked to heart disease. Losing two or more natural teeth in middle age may signal an increased risk for coronary heart disease, a U.S. study suggests. Reuters Health, 04/18/2018. (Also see Cardiac (Heart) Involvement and Periodontal Disease) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. wstport

    My biggest fear.

    Thank you Heather, what is Dimarzio ? Please and thank you Christina
  16. Joelf

    My biggest fear.

    Hi Wstport, I'm sorry to hear that your family are unsympathetic and not supportive to you and you're prone to suffering with depression. You can always post your fears on here for an understanding ear. Dimarzio is the name of one of our members. Best wishes,
  17. wstport

    My biggest fear.

    Heather, what is Dimarzio ? Please and thank you Christina
  18. wstport

    My biggest fear.

    I have a sister who thinks I look fine and it's all in my head for attention . Which is tough . This long-term pain really wipes you out , I can't function a lot of the time. And it brings on depression which I have to be careful with . Depression is a black hole and I don't want to go there .
  19. Heather7204

    My biggest fear.

    I have a 20-year-old daughter with Autism. My biggest fear is dying before she's able to live a full and happy, independent life. Also, of never seeing grand-children. And, lastly, yes - dying alone, in a place with carers who don't actually care. (I guess I have a lot of fears.) I am also in constant pain, dimarzio, and feel I must hide most of it. It's hard for people who are not chronically ill to understand someone can look "normal" on the outside and not be okay.
  20. Heather7204

    A ramble. And, hello..

    Hi Shelley, Thank you for the warm welcome. And, yes, I've definitely been looking into things. I'm glad to have made the decision to join. Best, Heather.
  21. Sputum Anticitrullinated Protein Antibodies in Patients With Long–standing Rheumatoid Arthritis (RA). Anticitrullinated protein/peptide antibodies can be detected in the sputum of RA patients and are correlated with the presence in the serum. PubMed, J Clin Rheumatol, 2018 Apr;24(3):122-126. (Also see Causes of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Understanding the Light and Dark Sides to Anxiety with Chronic Illness. Anxiety can be exacerbated or caused by the experience of constant pain blended with feeling exhausted and unwell. Scleroderma News, 03/20/2018. (Also see Anxiety and Attitude) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 05/21/2018.
  24. quiltfairy

    Stress.

    Thank you. The comments from my family are nothing new so I just close it out. I no longer go there alone and my aunt has learned the truth. And my therapist has done a lot to help me sort all of the rubbish out. This all started as a child, I now live 70 miles away from my family. When my mom passed away I thought it would quit, but it didn't. I have a new therapist; she is great. I will call her Monday and Wednesday. When I go to see my sclero doctor my aunt will be my driver; we have a good time, I always look forward to the drive. I always tell other people with scleroderma or other diseases to see a therapist; family and friends can blow up in your face simply because a lack of understanding. I send my blessings to everyone.
  25. Shelley Ensz

    Methotrexate/ Natural Treatment.

    Hi Itay, Welcome to Sclero Forums! As you've likely figured by now, the risk of methotrexate side effects needs to be balanced against potential harm from the disease and the complications you and your doctor are hoping to avert or assuage. I'm assuming that your doctor is prescribing it for some type of vasculitis (please correct me if I'm wrong.) Methotrexate is a serious medication -- and vasculitis a serious condition -- so it's very important to be well-educated about both of them. Also, if you are not going to take the methotrexate, for any reason whatsoever, it's vital to discuss that with your prescribing doctor so that they can address your concerns and have the chance to discuss the risks/benefits as well as to possibly prescribe something else that you find more amenable. So, please, right now, either put in a call to the doctor to get any remaining questions asked, or start taking the medication exactly as they prescribed...because vasculitis can cause seizures, strokes, paralysis, kidney failure...all sorts of irreversible and even deadly outcomes, depending on the type and severity.
  26. Cleaned endoscopes often contaminated. Many patients may be undergoing endoscopy with contaminated instruments, a pair of new studies suggest. Reuters Health, 04/18/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  27. Joelf

    Stress.

    Hi Quiltfairy, I'm sorry to hear about your son; it must be very challenging to deal with his misdemeanours and the stress involved cannot be doing your scleroderma symptoms any good. I do hope that you are able to cope with the comments from your family. Best wishes,
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