If you are active on social media and have a chronic illness, you’ve probably come across the term “spoonie.” The word comes from a woman’s explanation of how she has to manage her energy levels each day.  As she was in a cafe at the time, she grabbed a bunch of spoons…
Social Clips
#SclerodermaAwarenessMonth: Nicola Whitehill Profiles Scleroderma Patients From Around the World
One of our resident columnists, Nicola Whitehill, has been using Scleroderma Awareness Month to profile some of the people who live with the disease from around the world. MORE: Find out how you can support Scleroderma Awareness Month here. Writing on her own personal blog Raynauds…
Bob Saget has been a fierce advocate for scleroderma for almost three decades, ever since his sister passed away from the disease. He’s been an integral part of the Scleroderma Research Foundation, where he’s currently a board member. MORE: How Bob Saget became involved with scleroderma. This year marks the…
5 Things to Know About Using Medicinal Marijuana
Using cannabis or marijuana for medicinal purposes is a hot topic right now among patients and health practitioners. It’s regularly touted as a pain reliever for many chronic illnesses. According to the National Cancer Institute, here are some of the facts about medical marijuana and its suggested uses: It’s…
How Can CellCept Help Scleroderma Patients?
CellCept is a prescription drug made by Genentech that’s primarily used by patients who have had a liver, kidney or heart transplant. Used in conjunction with other medications like corticosteroids and cyclosporines, CellCept (or mycophenolate mofetil) helps to prevent the body’s immune system from rejecting the transplanted organ. MORE: Many scleroderma…
An Expert’s Insights Into Systemic Sclerosis
In this video posted on Boehringer Ingelheim’s Facebook page, Professor Chris Denton, consultant rheumatologist at the Royal Free Hospital in the U.K., talks about systemic sclerosis (scleroderma) and the importance of building trust between doctor and patient. MORE: Four tips for managing scleroderma on…
June is Scleroderma Awareness Month, which means the scleroderma community will be coming together to raise awareness of the disease and money for vital research into better treatments and ultimately, to find a cure. Read our columnist, Nicola Whitehill’s patient profiles campaign for Scleroderma Awareness Week.
The public’s interest in essential oils (EOs) — their uses, benefits, and safety — has been on the rise for several years. The most common means of using EOs is through aromatherapy, which includes having a diffuser in your home and or carrying a personal diffuser with you. You’ll find…
4 Tips for Caring for Someone With Scleroderma
If someone you love has been diagnosed with scleroderma, you may be concerned about how to best care for them and what you need to do to ensure they maintain a good quality of life. You will become an integral part of their healthcare team which may be challenging at times. We’ve compiled a list…
Ten-year-old Grace began experiencing symptoms of scleroderma in 2015 when she and her family were living in China. Grace was having a hard time brushing her teeth as she couldn’t open her mouth wide enough, and her mom began noticing changes in her daughter’s appearance. MORE: Wyatt the Warrior uses…
Recent Posts
- No-touch light test may help in monitoring scleroderma skin changes
- Ultrasound technique may help detect muscle changes earlier in SSc
- Study ties acid reflux, bloating to fatigue in scleroderma
- Study links cancer in scleroderma to timing and autoantibodies
- Routine blood test may help flag lung disease risk in diffuse SSc, study says
- Nearly half with SSc consider facial cosmetic therapy, survey finds
- Inhaled therapy for Raynaud’s attacks put on FDA fast track
- Vitamin B3 may improve blood vessels in scleroderma-related Raynaud’s
- John Stamos to be honored for longtime support of scleroderma research
- Study maps shift in prescribing patterns as guidelines evolve