Newsletter Spring 2013

 

 cropped-images-11.jpeg Scleroderma Association ofSaskatchewan
Newsletter  –  Spring 2013

www.sclerodermasaskatchewan.ca

Issue #50

President/Fundraising:
Louise Goulet: Phone: 306-584-1950
louise.goulet@sasktel.net

Vice President:
Shirley Gillander: Phone: 306-525-6377
sdgill@sasktel.net

Recording Secretary:
Olga Sereda: Phone: 306-693-1936

Corresponding Secretary:
Norma Redman: Phone: 306-532-4449
norperredman@sasktel.net

Newsletter co-Editor:
Janet Campbell: Phone: 306-757-0962
janet.campbell@uregina.ca

Treasurer/Newsletter co-Editor:
Gerald Shauf: Phone: 306-634-3433
465 Willow Bay
Estevan, Sask. S4A 2G3
glshauf@sasktel.net

Saskatchewan Parking Program for the Disabled:
Phone: (306) 374-4448

Handicapped parking permits cost $10.00. Successful applicants receive parking placards allowing them to park in designated areas for handicapped. Applications are available at any branch of Saskatchewan Abilities, or any motor vehicle issuing office.  Ask your doctor if you qualify. Try to look at getting the placard as a way to make your life easier.

CALENDAR OF EVENTS
AWARENESS:

Fall 2013 Meeting:
The fall meeting of the Scleroderma Association of Saskatchewan will be on October 19, 2013 at the Wascana Rehabilitation Centre. A “Good Morning visit” with coffee/juice and snacks will begin at 10:00 with the meeting beginning at 10:30.  The guest speaker will be Dave Sereda.

Steak Night Awareness Fundraiser:
June 2, 2013:  Creekside Pub and Brewery,
3215 Eastgate Drive, Regina, SK.
8-oz. steak with all the trimmings and a 12 oz. mug of house draught or another non-alcohol drink.  You may substitute chicken for the steak. Cost is $25.  Tickets are selling quickly.  We hope to have 120 guests in attendance.  Our evening will include door prizes and a 50/50 draw.  Call Louise or Shirley for tickets.

MEMBERSHIP FEES:
If you are receiving this newsletter by mail, please check your address label to see what your membership status is.  If it says PD13, you are paid for 2013. If it has X, your 2013 membership is valid as a result of a donation.  If there is nothing after your name, you have not paid for your 2013 membership.  Please remit $20.00 fees to SASK c/o Gerald Shauf at the above address if you have not already paid for 2013.  If you are receiving this newsletter by email and don’t know whether you have paid or not, please contact me.  Income tax receipts will be issued for memberships and all donations. Thank you for your support.

NEWSLETTER?
The Scleroderma Association of Saskatchewan would like to come up with a new and innovative name for our newsletter.  The suggested choices, in alphabetical order, are:

Scleroderma Express
Scleroderma News
Scleroderma Observer
Scleroderma Today

Send your choice to Louise by mail, email or phone as listed on page 1 before October 1, 2013.

DISCLAIMER
The Scleroderma Association of Saskatchewan does not endorse any drugs or treatment. We wish only to keep you informed. Check any treatment with your own physician.

President’s Report
Happy Spring to all. Today is April 28th and spring is finally on its way.  I know this because the snow banks in my backyard are down to 4 and 5 feet.  I do believe Saskatchewan set several new records this year, including a record snowfall, colder temperatures, and one of our longest winters.  As scleroderma patients, we don’t really appreciate winters like this so I hope you were able to escape to warmer climates, if only for a brief time.

June is Scleroderma Awareness Month and several provinces in Canada celebrate awareness in different ways. In Saskatchewan the City of Regina hangs our SASK banner on the pedway at 11th Avenue and Scarth Street throughout 1 or 2 weeks in June. The banner is 1 metre wide, 12 metres long, has our logo on it and reads:

SCLERODERMA  AWARENESS  JUNE 1 – 30
To kick off Scleroderma Awareness Month, on June 2nd, our group is hosting a Steak Night Awareness Fundraiser at Creekside Pub and Brewery, 3215 Eastgate Drive, Regina.  The meal will include an 8 oz. steak with all the trimmings and a 12 oz. mug of house draught or another non-alcohol drink.  You may substitute chicken for the steak. Cost is $25.  Tickets are selling quickly.  We hope to have 120 guests in attendance.  Our evening will include door prizes and a 50/50 draw.  If you wish to attend this event and would like to purchase tickets, please contact Shirley (306) 525-6377 or Louise (306) 584-1950.

At our April 13th meeting we had the pleasure of having Dr. Nicole Fahlman, rheumatologist, as our guest speaker.  Dr. Fahlman is very knowledgeable about scleroderma and was a most gracious presenter.  Her topic’s included cause and treatment of digital ulcers, calcinosis, and how scleroderma may affect the heart.

For a fall project, we are planning a raffle of 2 beautiful quilts made by our member Shirley Gillander.  Her work is superb as you can see in the photos.  We hope to have a few art pieces donated as well.  If you are able to assist in selling tickets, please contact one of the executive members on the front of this Newsletter.

We are excited to attend the SSC Scleroderma 2013 Congress in Hamilton, Ontario, September 27th and 28th.  Theme: ‘Caring for the Whole Patient’.   As more information becomes available re: registration, workshops, and guest speakers, we hope to post it on our website at www.sclerodermasaskatchewan.ca – under events, or at www.scleroderma.ca and go to Scleroderma Society of Canada.

I would like to thank Gerald Shauf, our web master, for keeping our website current and up to date.

I wish you all a warm and healthy summer and look forward to seeing you at our October 19, 2013 meeting.  We are excited to have Dave Sereda, pharmacist, as our guest speaker.

Louise

Scleroderma Meeting Minutes April 13, 2013
The spring meeting of the Scleroderma Association of Saskatchewan was held at the Wascana Rehabilitation Center in Regina on April 13, 2013 with 11 in attendance.

President Louise Goulet called the meeting to order at 10:15 a.m. and thanked Joyce Kellington for helping her provide the snacks.

A minute of silence was observed for Olga McIntyre, Rojeanne Chadwick and John Murray who passed away since the last meeting.  Added to the agenda was the question of pictures for the newsletter with adoption moved by Shirley Gillander.

Moved by Andy Sereda, seconded by Janet Campbell that the minutes of our last meeting be adopted as circulated.  Carried.

In business arising from the minutes, errors have been found in “The Scleroderma Connection”, especially the spelling of Saskatchewan.  Louise Goulet has emailed SSC to request corrections.

Regarding the joint Walkathon with the Arthritis Society – this will not be allowed.

Gerald Shauf would like someone else to be responsible for radio and TV promos.  Louise will take it on temporarily.

Moved by Gerald Shauf, seconded by Janet Campbell that the Treasurer’s Report be adopted as printed.  Carried.  Bank balance as of March 31/13 was $14,680.05.

In new business, for awareness and fundraising Louise Goulet suggested a Walk/Run.  She has spoken with Running Room about organizing something in Wascana Park and forming a committee for this.  June 2, 2013 was a possible date but several members have other plans around that time.  A walking track setting was suggested – Joyce Kellington, Janet Campbell and Shirley Gillander will help explore this.  We could possibly get logo T-shirts.

Discussion about another Steak night took place.  This would have to be a Tuesday night if held again at Bushwakkers in June.  Door prizes would be collected by Louise Goulet and Shirley Gillander.  Another possible fundraiser is to raffle a quilt made by Shirley Gillander.  She would need to be reimbursed for fabric cost and the cost of having the quilt layers stitched together.

It was noted that memberships for 2013 are due.

The Scleroderma Banner will be up in the pedway in downtown Regina in June – Scleroderma Awareness month.

In reporting on activity of the Scleroderma Society of Canada, Louise Goulet said they now have an office in Hamilton, courtesy of the Ontario and National organizations.  They have a new interactive website with provinces donating to help with its cost.  Moved by Janet Campbell, seconded by Andy Sereda that we donate $1000.00.  After some discussion the motion was carried.

The SCC has asked Saskatchewan to host the 2014 National Convention.  Edmonton and Winnipeg have offered to help apply for grants to cover expenses.  Gerald Shauf and Janet Campbell would handle this aspect for us.  Moved by Louise Goulet, seconded by Cheryl Wilkinson that we host the convention in conjunction with Alberta and Manitoba.  Carried.  After further discussion, moved by Gerald Shauf, seconded by Joyce Kellington that Saskatchewan would host the National Convention and raise $10,000.00 with Alberta and Manitoba to raise the balance of needed funds, about $7,000.00 each.  Carried.

Information on the Scleroderma Conference on Sept 27-28, 2013 in Hamilton, Ont. was passed out.  The theme is “Caring for the Whole Patient”.  The CSRG will not be attending this conference.  SPIN will have representatives there.

We will be selecting a name for our newsletter in the fall.  Suggestions are Scleroderma Observer, Scleroderma Today, Scleroderma Express and Scleroderma News.

The meeting adjourned for lunch and reconvened at 1 p.m.

Kelly Pearson and Audrey Henderson from the Arthritis Society joined us for lunch and the afternoon session.

In sharing time, one member mentioned that fecal transplant has been successful in some severe digestive tract illnesses and may be worth considering for those with Scleroderma who have no other options left.  One female member is taking Sildenafil (Viagra) for Raynauds with positive results.  There are also gloves called Wristies (http://www.wristies.com/) and Thermowear gloves (http://thermoflow-health.com/products-page/gloves) to keep hands warm.  Hot-shots are also helpful.  One member has qualified for lung transplant but will try to wait as long as possible for this.  She suffers from Interstitial Lung disease, which causes inflammation of lung tissue leading to scarring.  This occurs in Diffuse Scleroderma.

At this point, Dr. Nicole Fahlman, Rheumatologist, was introduced by Michelle Kapell.  She spoke on several aspects of Scleroderma beginning with Digital Ulcers.  These are caused by restricted blood flow to the fingers – Raynaud’s, which can occur with other diseases like Scleroderma.  In the limited type, Crest Syndrome, Raynaud’s can be present for years prior to diagnosis and is more severe.  Blood testing is done for the presence of antinuclear antibodies (ANA).  Treatment is basically avoiding cold and stress, dressing properly for the weather and not smoking.  Other treatments like biofeedback and acupuncture have been tried.  Most treatments are not too satisfactory and drugs tried are not that effective.  Finger ulcers are caused by the dry cracking of thickened skin.  If infection occurs, antibiotics are given.  Ulcers can be trauma induced where the skin is thin and tight, especially over joints.  If ulcerations are deep due to more acute loss of blood flow, more aggressive treatment is needed to prevent gangrene.  Typical treatment is hospital admission, extra warmth, heparin, pain management and medications to increase blood flow.  Calcinosis is the depositing of calcium in tissues and is more common in Crest Syndrome.  It usually occurs in pressure areas such as elbows and knees.  It can lead to ulceration and infection.  Warfarin and other drugs have been studied but results are not satisfactory.  Surgery and lithotripsy – like for kidney stones – are possible treatment methods.

Between 15-35% of Scleroderma patients have heart involvement.  The disease causes inflammation of the pericardium resulting in accumulation of fluid around the heart.  There are also changes in blood vessels, inflammation of heart tissue and muscle weakening which can lead to heart failure.  The valves are not commonly affected.  Treatment is to control blood pressure and check regularly for pulmonary hypertension.  Scleroderma is also a factor in mini-strokes (TIAs) and atrial fibrillation.

Dr. Fahlman graciously answered questions throughout her presentation.  She was thanked by Shirley Gillander.

In continuing with sharing time, a member talked about how quickly her Scleroderma had progressed.  She is currently on home dialysis.

Scleroderma Awareness Cards were handed out for placing in doctor’s offices and hospitals.

The fall meeting will be Oct 19, 2013 at Wascana Rehabilitation Center with Dave Sereda as guest speaker.  He will answer medication questions, and possibly speak on the LEAN concept in the new Moose Jaw hospital.  Some interest was expressed in hearing about Dave and Monique’s experience on a medical mission to Haiti.

Olga Sereda will provide coffee treats at the fall meeting.

Louise volunteered to draft a waiver form to allow publication of meeting attendee photos.

Adjournment was moved by Monica Dohaniuk.

The greatest mistake you can make is to be continually afraid you will make one.

Andrew Campbell offered to help members produce video testimonials for use on Youtube.  His email address is: acampbell500@gmail.com

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Fall Fundraiser:
Shirley has donated two quilts to raffle as a fundraiser.  Ticket details will be made available in the near future.

Below:  57 inches by 74 inches.
Quilt photo 2

Below:  50 inches by 60 inches
Quilt photo 1

Spring unlocks the flowers to paint the laughing soil.  But each spring, a gardening instinct, sure as the sap rising in the trees, stirs within us.  We look about and decide to tame another little bit of ground.

Canadian Scleroderma Research Group (CSRG):
You can make donations to the CSRG by donating to
CURE SCLERODERMA FOUNDATION • ITS MISSION: RAISING MUCH NEEDED FUNDS FOR THE CSRG.

The Jewish General Hospital in Montréal is responsible for administrating all Cure Scleroderma Foundation’s donations. A tax receipt will be issued for a donation of $10 or more.

http://canadian-scleroderma-research-group.ca/cure-scleroderma-foundation.html

http://www.csrg-rcs.com/Cure_Scleroderma_
Foundation_E.html

curesclero@gmail.com for more information.

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Useful Web Sites:

Scleroderma Association of Saskatchewan
https://sclerodermasaskatchewan.ca

Scleroderma Society of Canada
http://www.scleroderma.ca

CSRG – Canadian Scleroderma Research Group
http://www.csrg-grcs.ca

Arthritis Society
Ph:1-800-321-1433
www.arthritis.ca

United Scleroderma Foundation (USA)
http://www.scleroderma.org

Scleroderma Research Foundation (USA)
http://www.srfcure.org

What lies behind us and what lies before us are tiny matters compared to what lies within us.

Falling down doesn’t make you a failure but staying down does!

Sun Sense Guidelines
In order to reduce your risk of skin cancer, the Canadian Cancer Society recommends that you practice these Sun Sense guidelines.

1. Reduce sun exposure between 10 am and 4 pm.
2. Seek shade or create your own shade.
3. Slip! on clothing to cover your arms and legs.
4
. Slap! on a wide brimmed hat.
5.Slop! on Sunscreen with SPF #15 or higher – even on a cloudy day.
6.Keep babies less than one year out of the direct sun.

You don’t need bright skies and hot temperatures to get sunburned.  Clouds and low temperatures give us a false sense of security. Clouds can actually amplify the intensity of the UV rays by reflecting and refracting the sunlight.  The sun’s UVA, UVB and UVC rays cause damage to the skin.  UVA causes wrinkles, UVB is responsible for suntans and sunburns.  UVC does not penetrate the atmosphere’s ozone.

The biggest sunshine risk is skin cancer but it can also make you look a lot older than you actually are.  We should also pay extremely high attention to protect our eyes and always sunglasses, hats etc.

Excess sunbathing may also lead to weakening our immune system. This happens because UV radiation can alter the distribution and function of white blood cells in humans that are known for their active fighting-diseases role, for up to 24 hours after sun exposure. Repeated and excessive sunbaths can cause higher damage to the immune system.

Do not forget that the tan is actually the way in which skin reacts when is being injured. Tanning occurs when the UV rays penetrate the skin’s base layer and makes the skin to produce more melanin (skin’s natural pigment) as a response to the injury.

SASK Fundraising & Awareness Items:
We have the following available:

  • Floral note cards:

There are 8 different floral designs in each package. Scleroderma contact information is printed on the back of each note card.  They are very pretty cards to use or give as gifts.  The cost for a package of 8 notes and envelopes is $6.00.

  • Lapel pins:
    The attractive lapel pins are dark blue with Scleroderma printed on them in white letters.  The cost is $3.00
  • Magnetic ribbons.
    These are similar to the lapel pins.  They are 8 inches x 2.5 inches and are $2.00 each.  Put them on your car or your refrigerator.
  • Awareness Pamphlets.
    We now have a tent-style awareness pamphlet for distribution.

Please contact Gerald Shauf or Janet Campbell for more information or to place an order.

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PLEASE donate your empty computer printer cartridges and old cell phones to our group.  Help the environment and support Scleroderma research!

For more information, please contact:
Gerald Shauf Phone: 306-634-3433
Ken and Louise Goulet Phone: 306-584-1950.

All money goes towards research in Canada.  Ask your family and friends to donate their computer printer cartridges and old cell phones.