June is Scleroderma Awareness Month

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Scleroderma Overview

Scleroderma, also known as Systemic Sclerosis, is a rare chronic autoimmune disease of the connective tissue. The manner in which scleroderma presents itself varies widely, as does the course the disease may take. Symptoms may be visible, as when the skin is affected, or invisible - when only internal organs are involved, or a combination of both. Characterized by abnormal fibrotic processes which result from increased production and deposits of collagen in the skin, the name Scleroderma derives from the Greek words skleros (hard) and derma (skin). First reported in the mid-1700's, it remains difficult to diagnose. There is no known cure. Thanks to recent strides in research, more options now exist in many areas of symptom management.

  • Scleroderma is not contagious.
  • Though not inherited, there may be a familial predisposition.
  • While seemingly rare, scleroderma is thought to be more prevalent than muscular dystrophy, multiple sclerosis or several other better-known diseases.
  • Scleroderma, or 'systemic sclerosis,' is thought to affect approximately 16,000-20,000 Canadians (studies vary).
  • It is four to five times more prevalent in women than in men.
  • The cause/s is unknown though some chemical and environmental links have been acknowledged.

Symptoms of Scleroderma May Include One or More of the Following:

  • Raynaud's Phenomenon (abnormal sensitivity to cold)
  • Swelling of the hands and/or feet
  • Pain and stiffness in the joints
  • Thickening of the skin, joint contractures
  • Digestive system and gastro-intestinal tract problems
  • Oral, facial, and dental problems
  • Kidney, heart, and lung dysfunction

  Nonspecific Symptoms: extreme fatigue, generalized weakness, weight loss and vague aching of muscles, joints and bones   More About Scleroderma:

In 2013, the Scleroderma Society of Canada launched a comprehensive new national website. Whether you are newly-diagnosed or having been living with scleroderma for some time, the site offers helpful current Canadian, medically-reviewed information on localized scleroderma (linear, morphea) and Systemic Scleroderma (limited, limited with CREST, diffuse, and sine). We highly recommend a visit to the SSC site for further information: http://www.scleroderma.ca/Education/Overview.php

  A Message of Hope: Research into finding a cure for scleroderma is of tremendous importance. The SABC is proud to have played a role in the formation of the Scleroderma Society of Canada (SSC) in 1999. Thanks to the concerted efforts of a group of seventeen rheumatologists from across Canada, the Canadian Scleroderma Research Group (CSRG) was founded in 2004. In 2009, the SSC and CSRG were the recipients of a Partnership Award from the Canadian Institutes of Health Research (CIHR), in recognition of the results of their joint efforts on behalf of Canadians with scleroderma. In 2012, the CSRG joined with a number of international scleroderma research cohorts to form the ground-breaking initiative "INSYNC" the INternational SYstemic sclerosis iNception Cohort. http://canadian-scleroderma-research-group.ca/insync.html

 

Scleroderma research is now being undertaken at hospitals and institutions across Canada, and in countries around the world. In 2014, the World Scleroderma Foundation will host the 3rd Systemic Sclerosis World Congress; the inspirational 2012 Congress attracted 1,100 doctors and researchers working to improve the quality of life of those living with scleroderma, and toward the ultimate goal of finding a CURE.

 

Research

SABC is the User Partner Organization for the genome research program that is in the early stages of getting off the ground.  SABC has been behind this project for the last four years contributing $102,285 to date, with a request to Genome BC to match the total funds raised to cover the Project Budget of $279,172.  This shows the difference that your donations can make to the initiation of research that otherwise would not even be considered.

There is a pressing need for predicting which patients will repsond to therapy and understanding the reasons why others either do not repsond, or worse, develop an adverse drug reaction. The Proof of Concept Study is to investigate specific gene markers, on three cell types, skin, circulating immune and mononuclear, to identify which genes are active and non-active in scleroderma patients.  This study is important for the 0.03% of the general population with scleroderma to begin to predicting which patients will respond to therapy and understanding the reasons why others either do not respond or, worse, develop an adverse drug reaction.  Currently the median survival of scleroderma patients is 11 years and those with Interstitial lung disease, with no established therapeutic intervention, having a much lower expectancy of 2 yrs.

The research team brings together experts in respirology, rheumatology, bioinformatics and genetical statistics in a way to uniquely tackle this challenge.  The team is lead by Dr. James Dunne and Kevin Keen, with Dr. Raewyn Broady, Robert Holt PhD, Dr. Chris Ryerson, Dr. Pearce Wilcox bringing their specialties to the research program.  SABC President Rosanne Queen and Vice President Bob Buzza participate in the team in management roles and to keep the interests of patients and their families at the forefront.

This eighteen-month program will create a firm foundation for the development of an intensive genome research project directed at methods to improve treatment of scleroderma, with the expectation of receiving future support from research funding agencies.  As part of the team, we will keep you informed on the progress of this user/patient funded program.

 

 

Research in Canada

In addition to research being undertaken in BC, there are several high calibre research consortiums in Canada involved in studies focused on scleroderma:

Canadian Scleroderma Research Group, under the directorship of Dr. Murray Baron.
http://www.canadian-scleroderma-research-group.ca/index.html

The CSRG maintains a key database of scleroderma patient information used by scleroderma researchers of many disciplines.
To read about some of their published work, please visit:
http://www.canadian-scleroderma-research-group.ca/publications.html

Scleroderma Research Group of the Center de Hospitalier de l'Universite de Montreal (SRG-CHUM)
Read more about the accomplishments of Dr. Jean-Luc Senéchal and his team by visiting
http://sclerodermie.ca/notre-appui-a-la-recherche/la-chaire-de-recherche-en-sclerodermie/

Hamilton Scleroderma Group (HSG), St Joseph's Healthcare McMaster University
The work being undertaken by this group has wide ranging implications for the future of scleroderma research.
http://www.hamiltonscleroderma.org/

Scleroderma Patient Intervention Network (SPIN)
http://www.jgh.ca/en/BHRG_SPIN

Coming Events - save these dates!

 

June 3, 2016 - Friday

The ScotiaBank, Lonsdale branch, is partnering with SABC, again this year, to raise awareness for scleroderma in the community.  The manager and staff at the Lonsdale branch of ScotiaBank will be setting up a BBQ to attract the community and give SABC volunteers an opportunity to talk with the public about this rare disease.  Donations received will go toward the next stage of our BC-based scleroderma genome study, focusing on scleroderma biomarkers.

This event takes place Friday, June 3, 11:00 am to 4:00 pm, ScotiaBank at 1357 Lonsdale Avenue, North Vancouver.  If you can spend some time with us to raise awareness, please contact Rosanne at rq.sabc@telus.net

June 10 - 11,   2016 - Friday & Saturday

 2016 Scleroderma Association of BC (SABC) 32nd AGM/Conference

Friday, June 10

No-host dinner at 6:00 pm at the Cloud 9 Restaurant above the Empire Landmark Hotel

Saturday, June 11

Coal Harbour Room, Empire Landmark Hotel

1400 Robson Street, Vancouver, BC

                     SABC 32nd conference registration form

 8:30 Registration:  Conference kit pickup in the Coal Harbour Room. Breakfast will not be available, but coffee/tea/juices & water will be provided throughout the day.

9:15 SABC AGM: Introduction of Directors/guests; adoption of agenda; approval of 2015 AGM minutes; receipt of Directors’& financial summary reports; elections; new business, if any.

9:45 Dr. Tiffany Winstone: Identifying scleroderma patient variables that cause progressive worsening of pulmonary fibrosis

10:45 Dr. Kevin Keen: Genome 101 and the Scleroderma Association of BC research project

11:45 Grant Dustin & Dianne McPhee: Hearing the patient’s voice in health education

11:55 Doreen Lassam & Tammy Raynor:  4th Systemic Sclerosis World Conference highlights

12:05 Presentation of Gurmej Kaur Dhanda Service Award

12:10 Soup & sandwich lunch: Served in the Coal Harbour Room

1:15 Tammy Dyson, MSW, RCSW: Advance care planning – getting our ducks in a row

2:15 Dr. Jan Dutz: The immune system skin issues & treatment options in scleroderma

3:15 Linda Koby Blanchfield, RMT, CLT-LANA: Lymphatic & massage therapy benefits

4:15 Kudos & adieus

4:30 Adjournment

No-host ‘Scleroderma’ dinner at 5:30 pm in Gastown’s Steamworks Wine Room.

      

June 19, 2016 - Sunday

5th Annual Scleroderma Ride For Research

SABC members, family and friends are invited to join hosts Rosanne and David Queen in their 5th annual Scleroderma ‘Ride for Research’.  Though some will make the ride out to UBC and back through downtown, others can ride or walk through/around Stanley Park.  This is all about participation and having our groups be seen; raising awareness of this rare disease.  Of course there is the pot luck lunch for all to enjoy!  All proceeds will continue to support St. Paul’s Scleroderma Clinic’s ongoing genome research study.

The event is on Sunday, June 19th 9:30 am, meeting at Ceperley Park Picnic Area, Second Beach, Stanley Park in Vancouver.  For more information and to RSVP, please contact Rosanne at rq.sabc@telus.net

 

September 16 - 17, 2016

Recent Events

June Awareness at the Cloverdale Rodeo, May 23, 2016

At the start for June Awarness,  Rosanne & David Queen saw the “scleroderma scrabble video” at the main entrance to Cloverdale Rodeo on Monday May 23rd.  Rosanne said “it really is impressive to see it up on such a big screen and even better that tens of thousands would have seen it. They may not know what Scleroderma is but at least they've seen our message.

 

Creston Health & Wellness Fair, Nov 07 2015.

A fun day with serious thoughts, raising awareness for SCLERODERMA. A free raffle of dish garden was donated by Morris Flowers in Creston. Healthy minded Groups, Organizations and Businesses with new ideas, facts and learning sessions made the Day.

Attended by 5 members of SABC in back BettyKuny,Brigette Michalke and Kathy Evert, in front sitting (with Poppy)Mynrna Kaiser and Carol Shaw

Cheque Presentation to the Scleroderma Clinic

On Friday July 31st, 2015, Rosanne and David Queen were privileged to represent SABC at St. Paul’s Hospital in Vancouver to present a donation of $52,285.00 to the St. Paul’s Hospital Foundation – Scleroderma Clinic.  The donation reflects the commitment of SABC to continue the support of the Scleroderma Clinic and specifically the “ground breaking” proof of concept research study that is in the early stages.  The financial support this year signifies a major contribution to the second phase of the study.  With continued funding for this research study, we expect a solid foundation for future work.

Scleroderma, being a rare disease, does not receive much, if any, funding from governments.  This leaves any progress to understand, treat and cure this disease squarely on our shoulders.  With continuing support from individuals and corporations for our fundraising events (Scleroderma Ride for Research and Family Skate) and direct donations towards research, SABC is directing those funds to projects that make a difference and would not happen without you.

Dr. James Dunne (Scleroderma Clinic), Amanda Wootton (St. Paul’s Hospital Foundation), Rosanne Queen (President, SABC), David Queen (Treasurer, SABC), Dr. Pearce Wilcox (Scleroderma Clinic)

 

A major portion of SABC’s contribution to the Scleroderma Clinic this year came from the 4th Annual Scleroderma Ride for Research.  This year’s total of $33,255.00 came by substantial support from the Scotia Bank on Lonsdale in North Vancouver, a few generous individuals and countless donations from SABC members, family, friends and others.  Support for this event does make a difference, with over $80,000 raised over the last four years, research at the Scleroderma Clinic and exciting, new genome research.  SABC looks forward to continuing this event to raise much needed research funding.

Dr. Pearce Wilcox (Scleroderma Clinic), Rosanne Queen (President, SABC), David Queen (Treasurer, SABC), Dr. James Dunne (Scleroderma Clinic)

 

June 2015 – Scleroderma Awareness Month

Scotiabank Community Day

Two entities that start with “Sc” – Scotiabank and Scleroderma Association of BC came together on Friday June 5th to start off Scleroderma Awareness Month in the Lower Mainland.  Early conversations with Larry Clements, branch manager of the Lonsdale - North Vancouver branch, developed into Scotiabank putting on a community day BBQ to raise awareness of the disease.

Members of SABC showed up at Lonsdale and 14th at 10 AM to setup the BBQ and banners in front of the branch.  Larry was right in there organizing and setting up the grill, tent, banners and whatever else needed to be done, with the assistance of some of the Scotiabank staff.  By 11 AM the hot dogs were on the grill and SABC members were engaging locals on the sidewalk and public plaza.  Larry kept at the grill as our members explained what scleroderma is and their personal experiences, either as a patient or having a patient in their lives.  There were even a few women that had scleroderma which were unaware of SABC.

After five hours of grilling and talking it was time to call it quits.  A fantastically satisfying and rewarding day for everyone involved.  Donations for hot dogs totaled over $1,500 with an additional contribution of $5,000 from Scotiabank, all going towards the Scleroderma Ride for Research and the genome research project.

SABC would like to thank Larry and his staff for supporting us and putting out so much effort for the community.  We look forward to working with Larry and the staff at the Lonsdale branch again to continue to raise awareness.  Come out with us next year to enjoy the day and the people.

2015 SABC AGM & Conference

The Annual General Meeting & Conference was held on Saturday June 13th at the Holiday Inn Express at Metrotown, with as many as 70 SABC members, friends, family, newcomers and special guests.  Our President, Rosanne Queen, chaired the meeting and provided her summary of the highlights of SABC’s accomplishments and involvement in community events (of which there were many).  The financial position of the association remains strong with general donations for operations and research as well as corporate support on various fronts.  The elected board consists of Rosanne Queen, Joan Kelly, Bob Buzza, David Queen, Grant Dustin, Robyn Fox, Neil Mackie, Dianne McPhee, Sue Ashworth, Nadine Morton, Melissa Patton, Michael Queen and Melanie Ross, to serve the members and increase SABC’s profile in the community.

With the business part of the day over we rolled right into the conference and the guest speakers.  The organizing committee (Bob with some help) kept on the ball to fill the time slots with interesting and relevant speakers.  The Arthritis Society provided Tips and Tools for Managing Chronic Pain and Dr. Ada Man presented New Research Directions in Scleroderma before our local Dr. Jim Dunne updated us on the progress of the Scleroderma Genome Research Project.  Before lunch, the Gurmej Kaur Dhanda Memorial Scleroderma Community Service Award was presented to Donna Gervais for her many years of involvement in SABC and the community and the Gurmej Kaur Dhanda Scholarship was presented to Dr. Kun Huang.  The afternoon program began with Dr. Huang’s presentation The Contemporary Disease Burden of Systemic Sclerosis followed by, SSC & SSO President, Maureen Sauvé’s perspective on National & Worldwide Scleroderma-Related Progress.  The wrap-up for the day was an interactive, question and answer session where the audience could ask the panel general or specific questions about how they deal with the disease.

This was yet another success; with more the 70 people fitting into the space we had expected to only have to accommodate 50.  It was a great opportunity for the attendees to gather information, talk amongst each other and be a part of a strong and caring community.  Thanks go to the organizers and facilitators throughout the day to make the day what it was.  Special thanks go to the corporate supporters; Bayer, that made video recording of Maureen’s talk and the panel discussion possible (watch for them becoming available on the website) and Actelion, which made it possible for representatives from out of the lower mainland to attend the conference.

Watch for next year’s date and plan to attend.

4th Annual Scleroderma Ride for Research

This year’s Scleroderma Ride for Research, on Sunday June 21st, spread scleroderma blue across Vancouver and surpassed yet another ambitious fundraising goal.  The nearly 50 people enjoyed blue skies and sunshine (for a change) as the participants walk and rode one of the routes.  Seventeen riders headed over the Burrard Street Bridge (thankfully not closed for a massive yoga session), along the Kitsilano beaches to rise above the water at Spanish Banks to UBC and then returned via Coal Harbour.  The other riders and walkers took to the seawall and trails of Stanley Park, to enjoy the sun and the stiff breeze that picked up off of English Bay.  The support team, which stayed at the Ceperley Park pavilion, made sure that food and refreshments were ready (and stayed on the tables) for everyone for when they returned for the potluck lunch.

The success of this event is only possible by those that make it important to them and the people that they care about that have this terrible disease.  We encourage our members to engage in spreading the word with your friends and family.  Our purpose is raise the awareness of scleroderma, while building our community and raising much needed funds for research.  In discussions with the research doctors involved in the genome study, the competition for medical research of rare diseases is vicious and movement forward is Patient-driven research.  In taking the initiative to create opportunities for scleroderma research this year’s ride raised over $33,000, with 100% going to the second stage of the genome research study.  Thank you to everyone that supported this event and cause.

Put Sunday June 19th on the calendar for next year’s ride, and since it is Fathers’ Day plan to make it a family event.

Rosanne & David Queen

Vancouver International Jazz Festival

At the beginning of June, 2015, Scleroderma Awareness Month, SABC was approached with an advertising opportunity to include a video in the advertising mix on the large screen at the Vancouver International Jazz Festival main stage.  This was an opening to promote the disease to the masses at the festival during June 18th – 21st & 27th – 28th, to at least get the word scleroderma out into the public.  Scrambling to seize the chance, we engaged SSC to develop a 15 second video to put the message out there.  With a concerted effort on every front the video came together and Scleroderma Scrabble came to life.  We appreciate the support of SSC and the timely and focused effort of their creative team to make the video available to SABC.

         

May 26, 2016 - 1:30-3:30 pm

Lung Health Support Group Meeting
St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C.

Location: St. Paul's Hospital, 1080 Burrard Street Vancouver Providence Tower, 4th Floor Cafeteria, Dining Room 1-2
Topic: Dealing with Chronic Pain OR Updates in Research (to be determined) Free.

June 5, 2015
11am-4pm
1357 Lonsdale, N. Van.

ScotiaBank honours Scleroderma Awareness Month – Booth & BBQ! The SABC is partnering with ScotiaBank on June 5th to raise scleroderma awareness & funds for research. We are seeking volunteers for our booth, fundraisers for the event and visitors as well! ScotiaBank staff are hosting a BBQ for us!

June 12, 2015
6 pm

SABC No-Host Dinner & Social –
Cactus Club Café – Private Dining Room
4653 Kingsway, Burnaby, BC (across from Metrotown Mall). Our annual pre-conference dinner and social is always fun. Friends and family are welcome, too!. Help us let the restaurant know how many to expect by marking your registration form if you hope to join us – and let us know if you are bringing a friend!

June 13, 2015
8:30-9:15 am Registration
9:15-9:45 am Welcome/AGM
12:15-1:15 pm hosted lunch
4:30 pm Adjournment

SABC 31st Annual Conference & AGM Capilano Room - Holiday Inn Express Vancouver/Metrotown Hotel 4405 Central Boulevard, Burnaby, BC (1 block from Metrotown Skytrain Station) Our program offerings include practical information for those living with scleroderma, updates on promising research developments, including an address from one patient's perspective by Scleroderma Society of Canada President Maureen Sauvé, and an interactive audience participation session with a panel of scleroderma volunteers.

June 13, 2015
6 pm

Dinner (No-Host) & Social
"Reflect" Restaurant, 3rd Floor, Hilton Vancouver Metrotown Hotel 6083 McKay Avenue, Burnaby, BC
(site of 2012 SSC National Conference) Please let our office know if you hope to attend, so that we can reserve a seat for you!

June 21, 2015

4th Annual Scleroderma Ride for Research
Ceperley Park Picnic Area, Second Beach, Stanley Park, Vancouver, B.C.
Members, family and friends are invited to join hosts Rosanne and David Queen in their 4th annual Scleroderma Ride for Research. Whether you ride, walk or "scoot" there is a route that will suit! All are welcome at a potluck lunch to celebrate.

9:45 am Annual Group Photo
10 am Walk, Scoot or Ride
11:30 Pot Luck Picnic

June 29, 2015

World Scleroderma Awareness Day

July 28, 2015

1:30-3:30 pm

Lung Health Support Group Meeting St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C. Location: St. Paul's Hospital, 1080 Burrard Street Vancouver

Sept 17-19, 2015
Hamilton, Ontario

16th Annual Scleroderma Society of Canada Conference. Hosted by the Scleroderma Society of Ontario in association with the Scleroderma Society of Canada.

Sept 22, 2015
1:30-3:30 pm

Lung Health Support Group Meeting
St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C.
Location: St. Paul's Hospital, 1080 Burrard Street Vancouver

October 2015 (date TBA)

7th Annual UBC "Allies in Health" Community & Patient Fair Our volunteers will interact with health sciences students from a wide range of disciplines.

November 24, 2015
1:30-3:30 pm
SAVE THE DATES in 2016: Jan 19, March 8, May 10
(but check for updates)

Lung Health Support Group Meeting St. Paul's Hospital, 1081 Burrard Street, Vancouver, B.C. Location: St. Paul's Hospital, 1080 Burrard Street Vancouver Providence Tower, 4th Floor Cafeteria, Dining Room 1-2 (to be confirmed) Free. Please pre-register with Fran by calling 604.806.8818 (press 2).

November 29, 2015

11:30 am - 1:30 pm

SABC Christmas Luncheon

Check out the details in our newsletter or contact Joan at 604-940-9343 or by email to scleroderma@telus.net.

Please get on the list by November 25th.

Cactus Club Restaurant - Private Dining Room

4653 Kingsway, Burnaby BC V5H 2B3 · 604-431-8448(across from Metrotown Mall)         MAP http://goo.gl/RKHzKb

Members, family and friends are invited to get into the holiday spirit by attending our annual "no-host" Christmas luncheon and social. 

About Us

The Scleroderma Association of BC was founded in 1984 by five patients diagnosed with scleroderma in varied forms. Today we provide support to about 450 patients and their families throughout BC.
We exist to promote patient outreach, support and education; to create public awareness and understanding of scleroderma, and to encourage and support research.

The Scleroderma Association of British Columbia is an all-volunteer, registered charity.

Registered Charity Business Number: 134221894RR0001

 

 

 

                                             SABC Board of Directors 2015 - 2016

Executive Officers

President   Rosanne Queen   604-984-9425   rq.sabc@telus.net

Vice President & Recording Secretary   Bob Buzza   604-520-3258   rmbuzza@ret.bctf.ca

2nd Vice President & SABC Office Contact   Joan Kelly   604-940-9343   scleroderma@telus.net

Treasurer   David Queen   604-984-9425   dq.sabc@telus.net

Directors/Table Officers

(General)   Susan Ashworth   778-837-4540   alyosha303@gmail.com

Sclerodata Newsletter Editor   Grant Dustin   604-326-0072   mgdustin@telus.net

Website & Social Media   Robyn Fox   604-813-2350   sclerodermabc@telus.net

(General)   Neil Mackie   604-999-9729   neilmack@telus.net

UBC Health Sciences Fair   Dianne McPhee   604-513-5875   diannemcphee@shaw.ca

SSC board member   Melissa Patton   mdawnpatton@gmail.com

Technical/Computer Support   Michael Queen   604-420-1833   sabc.it@telus.net

(General)   Melanie Ross   778-867-0736   melanie_rak@hotmail.com

Community Contact Representatives

We are very grateful to our members who also volunteer as Community Contact representatives around the province. Areas represented currently include Campbell River, Creston, Nelson, New Westminster, Penticton, Prince George, Quesnel, Smithers, Valemount, Victoria, Vernon and Williams Lake. Joan at the SABC office (604.940.9343 or toll free 1.888.940.9343 -daytime/early evenings only please) will happily put you in touch.

Membership

Membership in the Scleroderma Assn. of BC family offers many rewards - not the least of which is the comfort of knowing you are not alone in facing challenges scleroderma may present.

Through the newsletter and the library, you may select self-help techniques and strategies that help relieve stressors. 'Stress' = 'Harm' to scleroderma patients. Our Community Contact program is there to assist those in more isolated areas. No matter where you are located in the province, we try to instil a sense of belonging, of being connected, of having choices.

Our membership fee is $20, with $4 from each $20 BC membership forwarded in support of the national organization, the Scleroderma Society of Canada. The SSC works on our behalf in many ways, but particularly to promote scleroderma awareness and support research through the Canadian Scleroderma Research Group. The BC Scleroderma group, having helped found and equip the St. Paul's Hospital combined Scleroderma Clinics, continues to support their research carried out by overlapping specialties, under the direction of Dr. Jim Dunne (rheumatology) and Dr. Pearce Wilcox (respirology). We are truly all-volunteer and continue to strive to make every dollar count.

(Membership fees may be waived for hardship)

Please join us today....patients, family, friends...Together we can make a difference!
 

Click Here To Download our Membership Form

Clinic Information

St. Paul's Hospital Scleroderma Combined Clinics


1081 Burrard Street
Vancouver, BC V6Z 1Y6
Phone:  604.732.4993
Email:  jdoffice@telus.net

Scleroderma patients in British Columbia are privileged to have access, by medical referral, to a Scleroderma Clinic, the only of its kind in western Canada.  Our St. Paul's Hospital Clinic services continue to grow, with Dr. Jim Dunne in charge. A welcome recent addition to the team is Dr. Chris Ryerson, whose specialty is Pulmonary Fibrosis.  The Clinic evaluates and treats patients from all areas of the province.  Dr. Dunne treats many people with severe or catastrophic Raynaud's diseases, and continues to work on angiogenisis with UNBC professor, Dr. Kevin Keen and partners.  He is also involved in the SCOT and DETECT studies, and is pursuing the opportunity to cooperate with the iCapture Centre in fibrosis studies at St. Paul's.

The Scleroderma Clinic has now partnered with Dr. Pearce Wilcox and the Pacific Lung Health Centre (www.pacificlung.com) for those with pulmonary issues. Drs. Dunne and Wilcox are following over 100 patients in their combined lung/rheumatology clinic.  There is a quarterly combined PAH clinic with VGH Drs. Levy and Swiston for those with pulmonary hypertension involvement. The combined lung/rheumatology clinic is engaged in several areas of research, including research into the mechanisms of scleroderma, the risks of progression, and evaluation of new potential therapies.

 

The Scleroderma Clinics at St. Paul’s Hospital and You – What To Expect

Dr. Thomas Goetz is at the helm for hand and joint issues (goetz@burrardortho.com).  Treatment or surgery for ulcerated hands/elbows and restricted joint movement, common occurrences in scleroderma, is available.  Dr. Goetz removes calcium using the same methods pioneered by Dame Professor Carol Black's unit in London (UK).

When It's Urgent
Scleroderma is not predictable. If you have a sudden change, or even if you have recently been seen for a flare that remains unrelenting, you or your legally designated representative may contact the Clinic’s coordinator, FranSchooley. If you are hospitalized at St. Paul’s, with the correct permissions in place, Fran may be a resource or an advocate for you. If you are hospitalized elsewhere in the province, also with the correct permissions put into place, it may be possible for health professionals at the Scleroderma Clinic to offer supportive information to your medical team, should they wish to confer. Messages for Fran can be left at 604.806.8818. Press “2” at the prompt.

For doctors only:
Referrals may be directed as follows:

Dr. James Dunne - Scleroderma Clinic:Fax: (604) 732-4984Tel:  (604) 732-4993

Pacific Lung Health Centre:Fax: (604) 806-8839

Tel:  (604) 806-8818

 

SPECIAL ANNOUNCEMENT!

Sandman Hotel's Downtown Vancouver Locations Initiative Renewed for 2015 in Support Our Association, Members, Families and Friends

The SABC is pleased to announce the renewal of a two-year sponsorship agreement with the Sandman Hotel Group's two Downtown Vancouver locations, and welcomes the news that the Sutton Place Hotel has joined this special initiative to benefit of our members who attend the St. Paul's Scleroderma Clinic and to our Association as well.

Many of our members come into Vancouver from around the province to visit the Scleroderma Clinic at St. Paul's hospital, and require accommodation while they are in town. Others may live in the lower mainland, but find it helpful to stay closer to the Clinic on occasion. Thanks to this unique agreement, the Sandman Suites on Davie, the Sandman Hotel Vancouver City Centre and, new in 2013, the Sutton Place Vancouver hotel will offer our members, friends & families their best available rate, and will also donate a 10% commission for each room night sold, year round, to the Scleroderma Association of BC. The SABC will, in turn, use the funds received to continue supporting the Scleroderma Clinic at St. Paul's hospital.

How To Book:
In 2015, the SCLERO corporate code expands to provide the Best Available Rate at any Sandman location in Canada, in addition to both downtown Vancouver locations. Booking is simple! Visit http://www.sandmanhotels.com/ and go to "Book Your Stay". Enter the location you wish, your arrival and departure dates, etc. In the "Access Code" section, choose the "Corporate Code" option and enter our code: SCLERO. Then proceed with the remainder of your booking. "The SABC offers its heartfelt thanks to the Sandman Hotel Group for their ongoing support, and to Pamela Banda at Sandman and Denise Kostash at Sutton Place for their special efforts on our behalf."

 

 

Stories

Scleroderma – Living with a disease that has no cure
By Rosanne Queen

Every day is a personal challenge for me to overcome the physical restrictions, discomfort and pain of living with a disease that is not visible to most, known by even less and which has no known cure. I'm constantly reminded I have Scleroderma because I'm always cold, my hands and feet are in "Raynaud's mode" and my hands swell painfully, I have limited dexterity and calcium deposits on my fingers and experience regular, severe acid reflux.

Like many diseases, I'm not fine one day and sick the next. Cold hands are a regular occurrence; "cold hands – warm heart". It was in 1992, while downhill skiing, I noticed that my thumb had gone white. Concerned about potential frost bite I consulted with my family doctor, who referred me to a specialist and after a time diagnosed me with Raynaud's Syndrome. I had never heard of it; "What is it?" A simple explanation is that the small blood vessels go "spastic", severely restricting the blood flow, therefore cooling and limiting the oxygen to the affected areas. The condition is most obvious at the extremities, fingers and toes, but also affects other parts of the body. The news was that if it became a severe condition I could eventually lose my finger tips. Oh great!

Life continued on, but downhill skiing was definitely out. The activities of daily living trigger Raynaud's episodes;attacks cause my hands to turn white, purple, blue and then pink.

Unfortunately, they are in Raynaud's mode most of the time, but luckily my fingers do not develop open sores. The internal organs react to the lack of blood flow and cause a painful coldness to my core. I wear gloves indoors as well as outdoors, I have a heated vest, heat packs for my feet, and I soak in our hot tub before going to bed to warm my core so that I can go to sleep without being chilled; I have been prescribed Viagra, yes Viagra, to help shorten the episodes and maintain blood flow to my extremities. Always in the back of my mind is "will I lose my finger tips or worse?"

Moving forward to 1997, the constant swelling of my hands and shiny thick skin leadme to consult a rheumatologist. During the visit I'm told "You have scleroderma". Shocked and dazed, I was not sure what questions to ask and not really taking in what I was being told: "Thick skin … hardness around the organs … nothing we can do … make you comfortable … know in about five years if you'll die… get really sick or just maintain the status quo … unfortunately there is no cure." The news was shocking and like most people these days, my husband and I searched scleroderma on the internet. The information about the disease was scary and depressing, with no light at the end of the tunnel. About that time there was a made for television movie about Bob Saget's sister who had scleroderma and died as a consequence. That was the image people saw when I told them about my diagnosis. Not a good outlook.

I'm not one to sit back and let things happen so I took charge. This disease was not going to consume my life or control me.My husband, David and I sat down to discuss the future and agreed on committing to experiencing life and start onour "bucket list" rather than wait until retirement. At the top of our list was to experience travelling in different parts of the world by cycle touring on our tandem bicycle. Though I had lost strength and dexterity in my hands I still possessed the strength in my legs and the determination in my heart to fully enjoy the cycling and adventure. Since making the decision we have taken trips from 6 to 15 weeks; experiencing the sites, history and people of Australia, Ireland, France, Denmark and locally. We are alwaysthinking ahead to our next trip and do not intend to stop any time soon.

Over the years, I have seen my body change; tightening skin and swelling of my hands are causing my fingers to permanently curl; my face is so tight it restricts me from opening my mouth, requiring me to cut my food into very small pieces; reduced elasticity of my esophagus is making it more difficult to swallow and resulting in severe acid reflux; scar tissue forming in my lungs has reduced my breathing capacity. With the overall tightness of my skin I feel like a size medium body in a size small skin.

I have spent many years trying alternative health care options, continuing exercise programs and staying positive. Like most people with this disease, taking medication becomes a big part of our lives. I can't imagine the quality of life I would have without them.

What I can tell you is; this disease has given me (us) a wakeup call. We all need to keep healthy and participate in life. That I am still able to ride our tandem and see the world, while getting in the ever important exercise for my overall health is demonstrating my control over my destiny. Every day I am so thankful for David's love and support; and the support of family, friends and my medical support team (family doctor, physical trainer, chiropractor, massage therapist, physiotherapist, rheumatologist, gastroenterologist and podiatrist).

I think that I have become a better person through this experience and realize just how fragile life is. And, every day I'm reminded that I have both Raynaud's and Scleroderma.

 

Desirable Blood Flow                        Blood Flow in Scleroderma/Raynaud’s

 

I was diagnosed with systemic scleroderma in 2001. I have some early interstitial involvement in my lungs that has been stable for several years. My GERD symptoms are manageable. Chronic fatigue is a big challenge and on-going balancing act. Raynaud’s is very limiting as well. In the past year the amount of pain in my life has been reduced dramatically because I have been using laser therapy (theralase.com) to heal problematic finger ulcers. I also love my re-chargeable battery operated heated gloves and heated fleece jacket. Despite the challenges of living with a chronic condition, I have a high quality of life living in the Yukon. Daily life takes a lot of effort but the love and support that I receive from family, friends and community as well as opportunities to be creative, make life beautiful.  I am a singer-songwriter recording artist. Singing is not only good exercise for my lungs, it is a way of expressing myself and sharing my experience with others. 

To hear some of my music, visit: www.NicoleEdwardsMusic.com

Tiasha's Story

The human body has always fascinated me. Having grown up as a dancer I have carried an intense interest for the way we move, grow, develop, and function. As a teenager I spent most of my week nights in a dance studio and the passion I had for connecting with an audience through my body continued to flourish as I pursued dancing pre-professionally as an adult. At 19 years old I awoke one cold morning to what would become the harsh reality that my dream career as a dancer, choreographer, and teacher would be short lived. Tight, tired, swollen, and discolored hands and feet, beyond any discomfort I had ever experienced before, overwhelmed and limited my capacity for complex and challenging movement. The first few doctors who tried to diagnose my condition considered my history of hip and joint pain (mostly caused by dancing and running long distances) and began experimenting with treatments for rheumatoid arthritis. After a few years of struggling to develop an effective treatment plan I was finally given the diagnosis of scleroderma and the symptoms I had been experiencing in my extremities were accurately classified as Raynaud’s Syndrome.

Through the process of diagnosis, my interest in the human form expanded deep into the realms of physiology. I found myself wanting to know everything I could possibly learn about pathology and rehabilitation so I chose to study kinesiology at the College of the Rockies in Cranbrook BC. The science and theory of our existence grasped my attention but my frustrations navigating the health care system and the impact of social inequalities on access to treatment pulled my focus to the bigger question of what ‘wellbeing’ really encompassed. Struggling to find an effective treatment through the bio-medical model that the system is dependent on led me to consider less conventional practices. I developed open dialogue with health practitioners who incorporated a holistic and proactive approach to preventing the progression of my scleroderma. After four years of perseverance I had accumulated a team of health practitioners in my community that were willing to advocate on my behalf and empowered me with a multidisciplinary ‘tool kit’ to manage my disease.

Through adapting my life style and finding a specialist who was willing to oversee my experimental journey, my body was able to start healing. I had finally found a medication that worked! It was a breakthrough that brought me inspiration and I am forever grateful to everyone who supported me through the long process. Although dancing in the capacity I once enjoyed was no longer possible I chose to not let my scleroderma stop me from enjoying a physically active life. I continued to teach and choreograph throughout my college years and dug into my love for the outdoors through hiking, long distance running, and mountain biking. Most importantly I realized that my recovery was something that required more than just medication and I wanted nothing more than to make wellbeing a possibility for everyone; whether it was scleroderma or any other health challenge they faced.

Three years into my undergraduate degree in Kinesiology I made the bold decision to change directions and study Life Sciences through the faculty of Health Sciences at Simon Fraser University. This satisfied my yearning to gain new perspective and develop a bigger picture of the factors that contribute to creating the conditions for health. The one factor that stood out as the limiting reagent was politics and so I extended my degree to encompass a minor in political science. My experience with scleroderma has not been without struggles but it has become a part of my perspective and I view it as a strength that I intend to use to contribute to public health policy reform as I move forward along my career path.

 

 

 

Past Events

2014 Christmas Party


Despite the bitter cold, a warm welcome awaited two dozen of our members, family and friends at our Christmas luncheon held November 30th at the Old Spaghetti Factory in New Westminster. We got the holiday season off to a great start by catching up with old friends and welcoming some new faces. The room was abuzz with the sounds of happy conversation. President Rosanne Queen launched the festivities, our cofounder Joan delighted everyone by reading one of her special poems, and everyone went home with a prize and a goody bag.

Volunteer Tracie & Member Donna SABCA warm welcome to all by president Rosanne QueenGifts and Goodies for All!

 

Allies in Health: 6th Annual Community & Patient Fair

Robyn Fox, Dianne McPhee, Doreen Lassam, Grant Dustin, Rosanne Queen, Arlene Burkhout, Donna Gervais, Suzanne Gavin, Melissa Patton

The 6th annual 'Health Sciences Fair' took place on October 29th in the Health Sciences Mall at UBC. More than 40 health organizations and agencies participated. The event is an excellent opportunity for students studying in a wide range of health science disciplines to learn about community resources and to speak with patients and others. Our volunteers were delighted to help them learn about scleroderma, and were kept busy! SABC board members Dianne McPhee again participated in the Fair's planning process and organized our SABC team of volunteers while Melissa Patton again assisted fair organizers with the overall set up for the day. Both the SABC & UBC were grateful to Pam Banda and Sandman Hotels for supporting the event once again.

Once again our booth was well attendedDemonstrating differences in "sclero" hands Similarity? All willing to help out!Newsletter editor Grant Dustin, Pamela Banda of Sandman Hotels & volunteer Doreen Lassam

 

Scleroderma Society of Canada 15th Annual Conference

The Scleroderma Society of Canada holds its AGM and Conference in the fall of each year in different cities across Canada, thus affording the opportunity for different segments of the population to more easily attend, and to access the expertise and experience of those in the local scleroderma community. Under the very capable leadership of Maureen Sauvé, the SSC continues to develop as a significant force for scleroderma interests in Canada, and beyond

Centre photo: Retiring & Current SSC Board Members, Rear L-R:
M. Richard, H.Goerzen, J. Lewis Anderson, C. Fortune, M. Patton, S. Haslam, L. Goulet, G. Little

  

Anna McCusker, SSC Executive DirectorScleroderma Assn Manitoba Pres. Marion Pacy & Maureen SauvéSSC/SSO President Maureen Sauvé with SABC Vice Pres. Bob Buzza

In the words of President Sauvé in her report to this year's meeting, 'The past year the Scleroderma Society of Canada continued to strengthen its national presence and outreach to Canadian patients, families and healthcare professionals, while at the same time, expanded our international presence as one of the world's leading scleroderma patient advocacy groups.' Conference delegates were introduced to recently appointed SSC executive director Anna McCusker, who spoke warmly about embracing her new role.


Joan, Bob, Ric & Tammy, Doreen & Melissa The Scleroderma Association of Manitoba hosted this year's conference, held in Winnipeg on September 19-20, 2014. SAM president Marion Pacy, their wonderful team of volunteers put together a well-organized conference that was attended by delegates from across the country. SABC board member Melissa Patton attended in her capacity as an SSC Director and Joan Kelly was a delegate. Thanks primarily to air miles donations and room-sharing, Bob Buzza & his daughter Robyn Fox also attended as reps. Other BC members attending independently were Cheryl Brown (Terrace), Doreen Lassam (Nanaimo) and her daughter Tammy Raynor with husband Ric. (Quesnel). Joan and Bob were warmly recognized during the meeting for their combined total of 60 years' service as scleroderma advocates. Melissa was re-elected as a national Director.
Eighteen unusually well-qualified speakers from fields as diverse as rheumatology, nutrition, vasculopathy, speech pathology, naturopathic medicine, trauma, pharmacy, and disability tax credits made presentations. Conference summaries, including content of speakers' presentations can be found here, and are well worth a visit: http://www.sclerodermamanitoba.com/2014-conference-program--presentations.html
One of the most effective and moving sessions involved a panel of five scleroderma patients. Each briefly described how the disease has affected and is affecting her. Questions and comments from the audience were then invited, which resulted in some truly wonderful and helpful exchanges. The SABC's 2015 AGM & Education Day will offer a similar panel.
The 2015 national meeting will take place in Hamilton, Ontario September 19-20. BC patients & their loved ones are invited and welcome to attend. Check here for updates:

 

SABC DONATES $24,937 TO SCLERODERMA RESEARCH AT ST. PAUL'S HOSPITAL

Denise Kostash, Rosanne Queen, Dr. J. Dunne, Dr. P. Wilcox, David Queen, Amanda Wooton

"Scleroderma Ride for Research" organizers Rosanne and David Queen (who also serve as the SABC's president and treasurer), and "Spencer Skate for Scleroderma" host Denise Kostash were delighted to present the proceeds of this year's events, totalling $24,937 at a ceremony held recently with the St. Paul's Hospital Foundation. Our donations were most gratefully received by Scleroderma Combined Clinic heads Drs. Jim Dunne and Pearce Wilcox, and St. Paul's Hospital Foundation representative Amanda Wooton.

Read More

3rd ANNUAL SCLERODERMA RIDE FOR RESEARCH

The third annual 'Scleroderma Ride for Research' took place on June 15th and was again a very successful event for fundraising and promoting greater awareness of the disease. Thanks to the hard work and dedication of event organizers Rosanne and David Queen, and their wonderful group of volunteers, a fantastic total of $21,746 was raised to supports scleroderma-related Raynaud's research at St. Paul's hospital. The SABC extends a big THANKS to them, the gang who organized the delicious pot luck post-ride picnic, and to all participants (about 45) and supporters of all ages.

Read More

We hope our members, friends and family will join us for our 4th Annual Scleroderma Ride for Research, which will be held once again in beautiful Stanley Park the morning of June 21st, 2015 – and enjoy our picnic potluck to follow.

 

30th ANNIVERSARY SABC ANNUAL CONFERENCE HIGHLIGHTS

The SABC annual conference and AGM was a noteworthy success. Held on June 6 & 7 at the Best Western Abercorn Inn in Richmond, this event marked the 30th anniversary of the SABC. Fifty SABC members, friends, family and newcomers, as well as special guests from the medical, research, fundraising and affiliated organizations also enjoyed a varied and informative program, as well as the opportunity to visit and share stories with others of the scleroderma community.

Thanks to our friends at the Scleroderma Foundation for sharing these excellent clips.

https://www.youtube.com/user/SclerodermaUS

Worth Reading

The Scleroderma Clinics at St. Paul's hospital and You
(summary of a presentation given by Clinic Coordinator Fran Schooley
to the 2013 SABC Annual General Meeting, recorded by SABC volunteer Robyn Buzza Fox)

Recognized as the leading clinic in western Canada with combined scleroderma specialty clinics at St. Paul's, the demand for access is increasing. A welcome addition to Dr. Jim Dunne's original rheumatology clinic and Dr. Pearce Wilcox's respiratory clinic has been Dr. Chris Ryerson with his focus on pulmonary hypertension. Dr. Tom Goetz is at the helm of the hand/joint clinic, offering treatment or surgery for ulcerated hands/elbows and restricted joint movement. It is hoped that cardiac care will be expanding and other clinic connections will be added.

The Clinic's original caseload has tripled in recent years, and Coordinator Fran Schooley reports a significant increase in new referrals. The expanding caseload is likely attributable to improvements in standards of care and the widening range of options for drug therapy - good news for people living with scleroderma. Additionally, more doctors are correctly diagnosing SSc at earlier stages, thus allowing for earlier intervention. This is good news - health professionals now have more tools in their tool box! The Clinic's doctors are also actively involved with a number of scleroderma research initiatives and have published a number of peer-reviewed studies.

With the correct paper work in hand**, it is almost always possible for you to have access to your community-based specialist and the services of the scleroderma clinics at St. Paul's hospital in Vancouver as well. It no longer needs to be one or the other.

Clinic Outreach
If your scleroderma is stable and your medical needs are being met, you may not need the services of the Clinic. But if you have complications, find yourself having a 'flare,' or feel that a second opinion would be helpful, you can ask to be referred (requiring an MSP referral) to the Clinic. Your doctors can always be copied on your information, and you can be referred back to them again. It is also possible to attend the Clinic on annual basis for a review e.g. your medications, keeping up with new therapies available, new trials, etc. (Note: It is always a good idea to have an up to date list of your medications/supplements with you at all times.)

You may be your doctor’s only scleroderma patient so please keep in mind that the Clinic is available as a resource to your doctor as well.

Clinic Day
If it's your Clinic day, please remember to allow extra time (insert joke about parking and unreliable elevators :-) ) and be patient. Bring items to make yourself more comfortable and pass the time (water, snacks if allowed that day, reading material, music player, items that help you with the dry air and fluctuating temperatures, medications, etc.) While you wait, there is behind-the-scenes coordination of your results taking place for the doctors who are meeting to discuss your test results and formulate the next step. Fran's goal for your time at the Clinic is to ensure that as much as possible is accomplished for you that day.

Expanding Distance Options
Modern technology is expanding outreach capabilities e.g. the 'tele-health' system for consults in isolated communities. Another distance option: after an initial full profile is undertaken in the Vancouver Clinic, web visits can be arranged to follow up with you together with your local doctor/specialists at their local office via video/teleconference.

When It's Urgent
Scleroderma is not predictable. If you have a sudden change, or even if you have recently been seen for a flare that remains unrelenting, you or your legally designated representative++ may contact Fran. If you are hospitalized, with the correct permissions in place, Fran may be a resource or an advocate for you.

**Contact Fran at: 604.806.8818 - press 2.

++As the course of this disease is often unpredictable, advance care planning is helpful. For more information, please visit:
http://www2.gov.bc.ca/gov/topic.page?id=E7A581A9BC0A467E916CFC5AD2D3B1E8

 


SABC 30th Annual General Meeting
June 2014 - Richmond, BC
EXCERPTS & UPDATES FROM SABC DIRECTORS' REPORT


 


SABC 29th Annual General Meeting
June 1, 2013 - Langley, BC
SABC DIRECTORS' ANNUAL REPORT

Foreword: This past year has included times of celebration (an unusually well-received national scleroderma conference was held in BC) and sorrow (beloved, long serving association co-founder Jeannette Stach was among those who succumbed to SSc-related symptoms). After decades of multi-faceted service, including editing our newsletter, Joan Kelly, our last surviving co-founder, will relinquish the editor's role this fall to Grant Dustin, who was a co-founder of our national organization and served as its Treasurer for several years. We are also saying a fond goodbye to our long-serving, befreckled BC Treasurer, Joanne Shale, who has kept our books through over a decade of significant growth. David Queen, lead rider on the Queen tandem bike and husband of SSc patient Rosanne (the other rider) will begin service as Treasurer in July.

2012 Annual General Meeting: This short meeting was held in a picnic shelter in Stanley Park on June 16, 2012 during a heavy rainstorm and the inaugural Scleroderma Ride for Research. Tributes were paid to key fundraisers Harv and Dhar Dhanda (Grandma's Gala), Denise Kostash and other members of the Spencer family (Spencer Skate for Scleroderma), and Rosanne and David Queen (Scleroderma Ride for Research). The Treasurer's report was approved and an impressive slate of nominees was elected by acclamation.

National scleroderma Conference:We co-hosted the largest ever scleroderma conference in BC at the Hilton in Burnaby in late September. One hundred seventy-five SSc patients and their loved ones, researchers, nurses, student researchers and their mentors from across Canada participated. The entire program was very highly rated. Over 70 of our volunteers contributed, which is amazing. Thanks! A comprehensive report appeared in the spring edition of Sclerodata. A similar conference will be held in Hamilton, Ontario at the Sheraton Hotel on September 28-29 (www.sclerodermacongress.ca).

Research: Detailed information is available through Canadian Scleroderma Research Group (www.csrg-grcs.com) and/or Scleroderma Society of Canada (www.scleroderma.ca). Research results internationally are extensive, impressive and burgeoning. The CSRG has joined a large, multi-national cohort of researchers intent on increasing their ability to perform research, jointly. Such collaboration will, for example, permit many studies of bio-markers and of pathophysiologic mechanisms of the disease near its onset which, because of relatively small, isolated numbers, is not currently feasible. The World Scleroderma Foundation's third Systemic Sclerosis World Congress will take place in Rome in February 2014. Over 1,500 researchers and patients are expected to attend. The program will emphasize clinically relevant developments in the field, with an emphasis on improving the quality of life for patients with scleroderma, worldwide. Major, collaborative steps are now being taken to improve diagnosis and treatment, to determine cause(s), and to eliminate the disease.

In BC, Dr. Jim Dunne, Director of the St. Paul's Hospital Scleroderma Clinic, and his colleagues have published four peer-reviewed research papers in the past two years. They are continuing to research biomarkers in scleroderma and are completing a study of organ damage and progression. One of the best genetic labs in the world is located at UBC. An approach is being made to test the feasibility of doing gene arrays on a group of patients with genetic lab personnel. Research combining longitudinal clinical data, biomarkers, and gene arrays would be difficult and expensive, but could be helpful.

Communications: A decision to publish Sclerodata, our newsletter, three rather than four times a year was reversed. Quarterly publication meshes better with fundraisers. We provided $1,300 from Dhanda funds to help defray the cost of creating a new national website at www.scleroderma.ca, now successfully launched. We are committed, in principle, to transferring our website, which we will continue to manage, to a national provincial micro-site option that is under active development, and have reserved $1,500 in Dhanda funds to expedite the transfer. The result should be greatly improved, one-stop service of benefit to SSc patients, everywhere. Robyn Fox has been regularly updating our website (www.sclerodermabc.ca); Facebook page and CanadaHelps on-line donation site. Recent initiatives include joining the "LinkedIn" social network for professionals, and set up of an account with PayPal for Non Profits (Canada) with services helpful to our members, event organizers and office.

Fundraisers: Harv and Dhar Dhanda will host the 5th and final Grandma's Gala in memory of Gurmej Kaur Dhanda on September 5, 2013. Last year's event raised an amazing $20,000, which has been dedicated to helping our Association increase its social media profile, raise awareness, support educational and training initiatives and support the 2012 national conference. This year's target is $25,000! We are grateful that the Dhanda's will continue to fund a $1,000 scholarship and provide $2,500 for SSc research, annually. In 2014 they will shift their overall philanthropic focus by raising funds for another worthy initiative close to Harv's heart, and to use Dr. Dhanda's skills as an eye surgeon to provide surgery to those in need in India. Rosanne and David Queen's inaugural Scleroderma Ride for Research last September raised $10,000 for research! This year's ride will take place in Stanley Park in fair rather than foul weather on September 22. The Spencer family scleroderma skate on April 7, 2013 raised over $4,000 for patient support and research - a new record. Next year's skate in memory of Irene Spencer will also be held in April. We are thankful to Gordon Stach and his son David and daughter Dolores for research donations made in memory of wife-and-mother Jeannette.

Health Fair: Organizer Dianne McPhee and Robyn Fox, Tom Mueller, Helene Lewis Munro, Melissa Patton, Melanie Rak, and Rosanne Queen actively participated in the 4th Annual UBC Community and Patient Fair for Health Professional Education on October 31. The fair provides a unique opportunity for interaction between patients and medical students. We will also participate in this year’s fair on October 23.

Christmas Luncheon: You and your loved ones are invited to join us at a no-host luncheon on December 1 at 11:30 am at the Poco Inn and Suites at 1545 Lougheed Highway, Port Coquitlam.

Respectfully submitted by Bob Buzza on behalf of SABC Directors
Buzza, Dustin, Fox, Kelly, McPhee, Morton, Mueller, Patton, Queen, Rak and Shale

 

 

Joint Conference of
the Scleroderma Society of Canada & the Canadian Scleroderma Research Group
September 28/29, 2012
Hilton Vancouver Metrotown, Burnaby, BC

Click here to view our conference summary and related material

 

 

Patient health survey results... What next?
By Maureen Sauve,
President, Scleroderma Society of Canada (from a power-point presentation at the 2nd Scleroderma World Conference, Madrid)

So we've done the survey... Now what?
Survey data are only valuable if people know about them, understand them and use them. Surveys in and of themselves have no real value. It is the analysis and communication of this data that is valuable. Effectively, we need to know the data well enough to identify areas where the data can be most useful in driving change.

Value of patient survey results

  • Provides accurate and up-to-date information based on scientific data, not personal opinions.
  • Leads to transparency in decision-making, which is important for buy-in from policy makers and funding agencies.
  • Helps shape or improve policies, programs, and research priorities which ultimately leads to improved patient health outcomes.

improved patient health outcomes. For scientists to have success in their applications for funding for research programs they need scientific evidence to support their claims. Personal opinions and observations are insufficient as justification for funding requests or healthcare policy changes. The survey provides this scientific evidence-based data.

Create an action plan
Create an action plan to communicate results to: Patients. Policy makers. Media. Medical publications. Special interest groups. Service clubs. Women's groups. Simply getting information to potential users can be challenging. First we need to identify potential users and target a method of communicating with them that is most likely to be effective. Creating an action plan allows us to customize our approach to each of these audiences. How information is presented to special interest groups and policymakers may be entirely different.

Put findings into context
Keep your audience in mind.what do they need know and want to know?

Communicate results by keeping intended audience in mind so that the messages and images are clear, comprehensible, relative and appealing to that audience. Add policy recommendations and conclusions. If the target audience is a special interest group like "Changing Faces," we might want to highlight information that addresses body image concerns in the survey data. Alternatively, when addressing government bodies concerned with disability and employment issues, we are more likely to highlight the high rate of disability related to scleroderma in attempt to influence policy makers to acknowledge and classify scleroderma-related disabilities.

Communicating results
Ensure that the patients who participated in the survey receive the results. Prepare a presentation. Touch on the highlights. Use descriptive analysis, not detailed statistics. Write articles for magazines, newspapers - including local papers. Women's Health; Skin Alliance; Changing Faces. Communicating the results should take many different forms from e-mails to written letter, web-sites, PowerPoint presentations, to radio talk-show interviews. When making a presentation it is important not to get bogged down in the details - you don't want to present all 69 symptoms and the statistics that go along with them. It is far more effective to highlight the top 3 or 5 than to overwhelm your audience with all the details. Have the rest of the details as back-up, but focus your communication on the highlights of each area.

Outcomes of the Canadian Scleroderma Survey
One of the major outcomes of the Canadian Survey is the Creation of SPIN - the Scleroderma Patient-centered Intervention Network. SPIN was developed to address under-researched areas identified through the survey. The Canadian data has been used to successfully secure funding for this international research group to develop and evaluate non-pharmacological interventions for patients with systemic sclerosis. The target area for these interventions are the issues that patients identified as important in the survey. These include:

  • Hand function
  • Psychological distress
  • Body image concerns
  • Development of a General Program of Self-Management

Compare Data
Look for comparable data.

What are the similarities? The similarities reinforce the credibility of the data. What are the differences and explanations? Are they the result of healthcare policies, differences in government funding of treatments? Can the differences be explained? Now that there is European data available I would really like to compare your findings with ours in order to identify the similarities and differences. This will be particularly relevant if there are certain healthcare policies in place that have resulted in improved healthcare outcomes.

Acknowledgments
The Health Communications Unit at the Centre for Health Promotion: University of Toronto

Understanding and Using the Demographics and Health Surveys - DHS Curriculum Facilitator's Guide: Module 7, July/August, 2011 Calverton, Maryland, USA. ICF Macro.

**Editor(s) note
We are in complete agreement with Maureen's opinion 'that it is important for patients to realize that this project was developed in direct response to the efforts that they made in communicating with the research community through the completion of the questionnaires..and most importantly, that those efforts have translated into a well-funded project to address the needs identified within the survey.' Thank you Maureen, for offering this insight into the value of surveys; the information is certain to improve participation in future surveys!

Contact us

Office E-mail:   scleroderma@telus.net

Address: Scleroderma Association of British Columbia
                PO Box 16155 Lynn Valley
                North Vancouver BC Canada V7J 3H2

Telephone: 604.940.9343   orToll Free 1.888.940.9343     Fax:604.940.9346

Newsletter Editor E-mail:
Your suggestions, ideas, tidbits, letters to the editor and articles of interest are always welcome!mgdustin@telus.net

Website Editor:sclerodermabc@yahoo.ca

St. Paul’s Hospital Scleroderma Clinic
(by referral)604-732-4993

Community Contact:Please call the office for the name of your nearest Community Contact, or see the back page of the latest issue of our Sclerodata newsletter.

  HELPFUL SITES   Do you know of a helpful, reliable website? Do you have suggestions or feedback for our website? Your comments are always welcome. Please email Robyn at sclerodermabc@yahoo.ca.   Facebook
Receive regular updates on the latest SABC news by joining our Facebook group page at http://www.facebook.com/ScleroAssnBC   In B.C.   Pacific Lung Health Centrewww.pacificlung.com BC & Yukon Division, the Arthritis Society www.arthritis.ca Sjogren's Syndrome Support Group www.sjogrens.org BC Children's Hospital Rheumatology Clinic www.bcchildrens.ca UBC Division of Rheumatology (see Links & Patient Information) www.ubcrheumatology.com Pulmonary Hypertension Support Group         Marg Lehmann    marg@bcphs.org   In Canada   Scleroderma Society of Canadawww.scleroderma.ca Canadian Scleroderma Research Groupwww.csrg-grcs.com Arthritis Research Centre of Canadawww.arthritisresearch.ca     Other   Scleroderma Foundation www.scleroderma.org Raynaud's Association www.raynauds.org   Please email us with your suggestion – sclerodermabc@yahoo.ca

SABC Store   fundraiser items

Scleroderma T Shirts sizes S-XXL $15.00

Members Ribbon Pin (Blue) $3.00 each or 2/$5.00

Scleroderma Bumper (anywhere) Sticker $2.00 each or 3/$5.00

Make cheques payable to: Scleroderma Assn of BC

PO Box 16155 Lynn Valley
North Vancouver BC Canada V7J3H2

For Further Information Call: 604-940-9343
1-888-940-9343

Video time markers:
00:15 introduction and personal stories
00:42 Donna Gervais
01:28 Doreen Lassam
04:05 Maureen Worron-Sauve
07:01 Rosanne Queen
08:22 Melissa Patton
13:00 Joan Kelly
17:04 panel discussion
17:15 Hands & feet change size?
17:31 Medical marijuana for pain?
19:55 Medication side effects or disease symptons?
21:38 Skin pigmentation
22:55 Tips for travellers
26:43 Dental issues
29:46 Advanced directives
31:40 Creams & lotions
34:38 Tips for Raynaud's
38:38 Favorite pain medications
43:05 Travel assisstance for B.C. patients
45:26 Moments of inspiration
54:52 Closing