Engineering students at the University of Sussex were given the project to design products that solve real problems. Student Diane McSweeney designed Pulse jewelry that uses heat to ease the aches and pains of conditions such as rheumatism and Raynaud’s phenomenon. [Read more…]
This article associates Raynaud’s with slower nail growth. This is the first time we’ve seen a link between the two. Do any of you find your nails growing slower since becoming aware of your Raynaud’s condition?
Many of you have given us direct feedback on how we’re doing in helping to support the Raynaud’s community, and we’ve published your testimonials here on our web site at https://www.raynauds.org/index.php/about-us/member-testimonials/.
Now there’s a place to formally feature product reviews for nonprofit associations on Guidestar – a leading resource for information about non-profit organizations.
Guidestar offers a valued resource for larger donors, including foundations, evaluating non-profit organizations for funding. It’s also used by smaller contributors who want to ensure their dollars go toward organizations who truly deliver on their mission. Your feedback will help reinforce and add credibility to our story. So please go to Guidestar and give us your feedback today!
Orion Pharma, a pharmaceutical company based in Finland, would like to gather information about Raynaud’s from people suffering from this condition. The data gathered in the research will be used by Orion to help develop a new class of medication for Raynaud’s patients.
Specifically, Orion is looking to better understand the medical needs of people with Raynaud’s and how they cope with the condition. Sufferers participating in the research will be asked to provide information on three main topics:
- Background on your Raynaud’s condition
- How you control the symptoms of Raynaud’s
- Basic information on yourself (demographics, geography)
Here’s the link: (Survey Closed)
We encourage Raynaud’s sufferers to take a few minutes and complete the survey. It’s a great way to help the Raynaud’s community!
After knowing for years that something was wrong but not having enough to go on to prove it, my pediatrician suspected that my then 5 year old had Juvenile Arthritis. It took a long time to diagnose her- almost a year!
Eventually she was also diagnosed with scleroderma and mixed connective tissue disease. Her new rheumatologist had recently put her on Naproxen and Methotrexate to help manage her pain and inflammation when we first noticed other changes. I went in her room to help her with her socks when I noticed that she had one toe that was bright white. By the time I called my husband in to look, it was back to normal. A bit irritated with me, he went back to what I was doing like he didn’t believe me. The next night he called me into her room. This time, her whole foot was white. As we were sitting there trying to figure this out, it started to change to purple. Needless to say, we panicked! I called her rheumy the next day, and they said that it was most likely Raynaud’s. Eventually they were able to see first hand in the office, though just in case, I take pictures of her bad episodes and show them in the office or email them to the nurse.