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Canadian Network for Improved Outcomes in Systemic Lupus - CaNIOS – has a new E-Newsletter. Sign up today.
CaNIOS would like people with lupus to get connected to the new CaNIOS e-newsletter (“ In Touch” in English, “Contact” in French) that is full of the latest information and updates in lupus research.
Here is a description from CaNIOS about their E-newsletter:
“Whether you are part of CaNIOS as study participant or an advocate of the many lupus research studies CaNIOS has pioneered over the years, you would not want to miss the latest issue of CaNIOS In Touch (English)/Contact (French). In Touch/Contact will provide you with hot off the bench updates of current lupus study results by CaNIOS members throughout Canada”.
Get In Touch by visiting CaNIOS (www.canios.ca). If you wish to receive issues of the newsletter delivered directly into your e-mailbox twice a year, contact the CaNIOS Coordinating Centre by sending an e-mail to.
jclaudio@uhnresearch.ca
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“Living Well with Lupus: Pathways to Good Health” – 7th Annual National Lupus Patient Symposium coming to Montreal.
Set May 31, 2008 on your calendar as the day to attend this annual patient symposium – the only national lupus patient symposium in Canada. Sessions include:
- Lupus and The Nervous System
- Keeping Well Around the Clock
- Kidney Disease in Lupus
- Youth to Adulthood – the Transition Years
- Update on Lupus Research in Canada
- La maladie cardiaque et le lupus
- Managing Arthritis and Employment : How are People Coping
- Mise-a-Jour sur la recherché sur le lupus au Canada
- A Recipe For Success…Healthy Eating to Help You
The Symposium starts at 9:00am and ends at 4:30pm. The registration fee is only $45.00 and that includes materials and lunch.
To learn more about the event or to download a registration form, visit the Lupus Canada website at www.lupuscanada.org
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Lupus Canada and CaNIOS host a new event – Café Scientifique on May 29, 2008 in Montreal.
For the first time, Lupus Canada and CaNIOS are joining together to offer an evening discussion focusing on lupus research. The Café Scientifique is an opportunity for knowledge transfer and exchange on lupus as researchers, physicians and people with lupus come together for an informal discussion and sharing on lupus research in Canada. You will have the opportunity to meet and hear from leaders in the lupus research community, and share your thoughts on research priorities and how research outcomes impact your life.
Confirmed Leading Scientists participating in the discussion include:
- Dr. Paul R. Fortin (Rheumatologist from Toronto)
- Dr. Deborah DaCosta (Psychologist from Montreal)
- Dr. Christine Peschken(Rheumatologist from Winnipeg)
- Dr. Joan Wither (Basic Scientist, Immunologist, Rheumatologist from Toronto)
- Dr. Lori Tucker (Pediatric Rheumatologist from Vancouver)
The event will be held at the Delta Montreal Hotel, starting with an informal reception at 6:00pm. The Café Scientifique is from 6:30pm to 7:30pm, and a Wine and Cheese reception will follow. This event is free. To attend, please RSVP before May 15th to Pamela Bowes at pamela.bowes@bellnet.ca or call 1-800-661-1468.
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Putting Raynaud’s on Ice
Winter brings lots of good things: holiday cheer, roaring fireplaces and hot chocolate. But for people who have Raynaud’s phenomenon, the season can also mean months of misery.
Raynaud’s phenomenon is a condition that affects the blood vessels in the extremities. It is characterized by episodic attacks in which the blood vessels in the fingers and toes constrict (narrow), usually in response to cold temperatures and/or emotional stress. They may turn white, blue or red, and feel cold, painful and/or numb. An attack generally lasts until the skin is warmed up and the blood vessels expand. As blood flow returns, the fingers and toes may tingle or throb.
One-third of people with lupus experience Raynaud’s phenomenon. Talk to your doctor if you think you do.
We don’t know what causes Raynaud’s and there is no cure, but you can take steps to reduce the frequency and severity of attacks. Here are some ideas to help you keep the chill at bay this season.
- Dress in layers and wear a hat to prevent loss of body heat. We lose most of our body heat through the top of our head.
- If you’ve been outdoors and need to warm your fingers or toes, run warm water over them or soak them in a bowl of warm water.
- At home, wear socks or slippers. You can also try wearing mittens to bed.
- Avoid handling cold objects. Put on an oven mitt before reaching into the fridge or freezer.
- Cut back your intake of caffeine and tobacco, both of which can restrict blood flow. Smoking may also trigger an attack because it lowers skin temperature.
- Wear mittens rather than gloves. Mittens keep fingers together, which helps keep things toasty.
- If your clothing gets wet from perspiration or melting snow, change into dry garments as soon as you can. Wet clothing can speed up the loss of body heat.
 For really cold days, use re-useable hand warmer packets, such as the brand “EZ Heat,” which radiate heat within seconds and for several hours. Pristech Products, the makers of EZ Heat and other heat products can be contacted through their website at www.pristech.com. - If your Raynaud’s get worse with emotional stress, practice relaxation exercises, such as deep breathing or meditation.
- Exercise regularly to improve your overall well-being. Talk to your doctor before starting any new fitness activity.
- Some medications, such as vasoconstrictors (which includes beta-blockers, many cold preparations, caffeine, narcotics, some migraine headache medications, some chemotherapeutic drugs, and clonidine, a blood pressure medication) can aggravate Raynaud’s. Talk to your doctor if you are concerned about your medication.
For more information about Raynaud’s phenomenon:
- Read the Lupus Canada fact sheet on “Other Conditions Seen in Lupus” that has more information on Raynaud’s Phenomenon
- visit the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at here or
- The Arthritis Society (go to www.arthritis.ca, enter “Raynaud’s” in the search window, and look for the “Raynaud’s Phenomenon” factsheet).
This article, “Putting Raynaud’s on Ice” was written by Jaclyn Law
Jaclyn Law has had lupus for 13 years. She volunteers as a writer and editor with Lupus Ontario and Lupus Canada.
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Online registration is now open for Walk a Block for Lupus!
 Lupus Canada’s 7th annual Walk a Block for Lupus is well on its way for May 10, 2008! Online registration is now open, please visit us at www.lupuscanada.org and click on the Walk a Block logo on the left side to register. If you participated last year, you can sign on using your previous username and password. Join a walk as an individual participant, join a team, or lead your own team at a walk location closest to you. You may even decide to start your own walk in your community! So put on your walking shoes and join others as we walk together to conquer lupus!
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“Get In The Loop” Youth Newsletter – can now be sent directly to your “In Box”
To receive the Youth Newsletter, published quarterly, visit the Lupus Canada website and sign up for this newsletter to be sent electronically directly to you. This e-newsletter is full of interesting and informative articles written by young people with lupus for young people with lupus. To sign up, visit the Lupus Canada home page at www.lupuscanada.org, and to see the latest “Get In The Loop” click here
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