would goto sleep.Iwouldn’t goto sleep–I beginning to beachoreto meandwhenI day andallofsuddena10 hourday was “I amusedto going12,14, 16 a hours someone withwhoisoverloading iniron. exhausted. Chronic fatigue iscommonwith from feeling energetic to constantlybeing doctor becausehewas feelingHewent off. About 18 monthsagoGeorgewent to the right?” says GeorgeVanderBurg. We checkautomatically for bloodsugar, high iron, itshouldbeanautomatic check. someonecomeswithsymptoms“When of every family doctor’s radar. He feels hemochromatosis needsto beon was willingto usehispublicplatform to raiseawareness aboutthepotentially fatal disease. has beenapoliticianfor 25years, sowhenhewas diagnosedwithhemochromatosis itwas nosurprise he finished ridingintheparadeandchattingwithhisconstituents.Heispassionat It’s HeritageDay andMLAGeorgeVanderBurg inthesmallcommunityofRochfort Bridge,Alberta, hasjust By Rayne Kuntz MLA Fights FALL | 2011 Hemochromatosis below ahundred.By then Ihadmy DNA “Seventeen or18 pintslater, Igot down to donations). of regularphlebotomies (similarto blood Ritchie immediately atreatment started his hematologist andgoodfriend,Dr. Bruce men. Strongly suspectinghemochromatosis, 300 ng/mLisconsideredoutofrangefor his ferritin countwas 1200ng/mL;over When VanderBurg’s bloodwork cameback, people, andIalways have been.” to dowithmy work pace;Iamenergizedby my family doctor Ididn’tthinkithadanything wrong withmy body,” says VanderBurg. “Itold would passout.Iknew therewas something Find out more atwww.toomuchiron.ca You canhelp Iron iron out Hemochromatosis out Hemochromatosis iron Filings

Alberta inFocus Alberta common genetic disorder inCanada. the disorder andwere surprised to learnitisthemost hemochromatosis. TheRalston’s hadnever heard about their chat,VanderBurg sharedsomeinformation about awareness aboutthepotentially deadlycondition.During he hasbeenusinghispublicplatform asMLAto raise Since VanderBurg was diagnosedwithhemochromatosis, Hilda Ralston atthe Rochfort Heritage Day parade and fair. MLAGeorgeVanderBurgAlberta chattingwithGeorgeand Continued onnext page of understanding hisculturalroots.of understanding Mostof the population.VanderBurg knows thevalue alotnumbers higherinsomesegmentsof common genetic disorder inCanada,withthe has hemochromatosis, makingitthemost It’s estimated that1in300Canadians rightawayServices givingblood.” andstarted the 31 year old.Hewent to CanadianBlood Onehadanironcarriers. countabout400, then we got oursonstested. They areboth – they don’thave hemochromatosis. We and my brother tested. They areboth carriers hemochromatosis. “We got my sister tested positive for to the two cause genes necessary results.” VanderBurg confirmsthathe tested awareness andsupport awareness e about public service; he e aboutpublicservice; Providing information, Providing in Canada.

Alberta MLA Fights Hemochromatosis (continued) his constituents and colleagues share his significant because when two carriers have VanderBurg is thankful for his diagnosis. He northern European heritage children, the offspring are at risk of inheriting feels re-energized and in control of his own (VanderBurg is Dutch), which increases their the two hemochromatosis genes. health, which is far better off than his father risk of having hemochromatosis. “I don’t think too many days go by when was in his mid-fifties. VanderBurg and his After VanderBurg was diagnosed, he found someone doesn’t confide in me they have it specialist both suspect his father probably out two of his fellow Conservative caucus too - I tell them I was diagnosed 18 months had hemochromatosis and the excess iron members also have hemochromatosis. ago with hemochromatosis. It scared the contributed to his death. heck out of me, but with good medical advice “That is three in 83… yes I was surprised,” and through some initiative on my own… “Knowing that I have something that can be VanderBurg comments. “They came to me the Internet has good information on it and managed so easily... I am blessed. My father after I brought up my condition in caucus.” I encourage people to join the Canadian had pancreatic cancer, he was written off. Hemochromatosis Society, they have good If you are going to have a disease this is the It’s estimated 12,000 Albertans have two newsletters; I mail some of them out to one you want.” copies of the gene that puts them at risk of some people myself…With knowledge comes iron overload and 400,000 Albertans carry the ability to manage this disease,” says one gene (they are called “carriers”). This is VanderBurg.

1200 Ug/L

1000

800 George VanderBurg monitors his ferritin levels by recording 600

them on a graph. 400

200

0 May Jun Jul Aug Sep Oct Nov Dec Jan Feb Mar Apr

Alberta’s Spirit is Well Alberta MLA George VanderBurg and Bob Rogers, Executive Director of the Canadian Hemochromatosis Society (CHS), in George’s office in the Alberta Legislature. During Hemochromatosis Awareness Month in May, Bob was in Alberta to pick up an Alberta Spirit Grant presented by the Minister of Health and Wellness, Gene Zwozdesky. The meeting with the Minister, which was arranged by George VanderBurg, focused on raising awareness and prevention. It is the first time CHS has had the opportunity to talk to a provincial cabinet minister about hemochromatosis and the important work being done by CHS. See full story on page 3.

2 | Canadian Hemochromatosis Society | www.toomuchiron.ca Alberta Supports Hemochromatosis Cause

The Government of Alberta gave a large boost to hemochromatosis awareness in the province this past May with a Community Spirit Grant in the sum of $9808.18.

“Today marks a very important step toward fund community information seminars and Currently, CHS is contacting PCNs to see if they raising a greater awareness about a really continuing medical education throughout will partner with the Society to promote these important disorder call hemochromatosis,” Alberta in cooperation with Primary Care opportunities. In addition, CHS is seeking other announced Alberta’s Minister of Health and Networks (PCNs) at the encouragement of forums to present information in places where Wellness, the Honourable Gene Zwozdesky, Minister Zwozdesky. Through this outreach, PCNs are not planning to host a seminar in the as he presented the cheque to Bob Rogers, CHS aims to raise more awareness of the next 12 months. Executive Director and Chief Executive Officer disorder. of the Canadian Hemochromatosis Society Members and supporters of CHS can also on May 5th. “We as a government are very Information at each seminar is made available help the Society come to their community. If interested in encouraging healthier lifestyles through a PowerPoint presentation, medical you can assist in finding a venue to hold the and focusing on the wellness side of the guidelines, brochures and newsletters. information session and aid in promoting agenda, and so this particular grant of $9800 These seminars are beneficial to those who the event, please contact the CHS office at will help the Canadian Hemochromatosis have just found out they have hereditary [email protected] or call Society to better establish themselves here in hemochromatosis, to relatives of patients with (604) 279-7135. Alberta,” said the Minister. hemochromatosis, as well as to those in the at- risk group who may or may not be experiencing Keep an eye on the Society’s website, www. Dr. Bruce Ritchie, physician to Alberta MLA and symptoms. toomuchiron.ca, for the schedule of seminars hemochromatosis sufferer George VanderBurg, coming to a location near you. supports more people having their iron levels tested.

“I think this is a model for how we should be Community Spirit Grant Program doing healthcare,” said Dr. Bruce Ritchie, a Give back to your community and help make it vibrant hematologist at the University of Alberta. “We and strong! Your donation will be matched by the need to be proactive not reactive.” The Community Spirit Grant will be used to Alberta Government.

• The Community Spirit Program • CHS can apply to the program once

From left to right: The Honourable Gene Zwozdesky, Bob Donation Grant provides an it demonstrates it has received the Rogers, George VanderBurg, Dr. Bruce Ritchie. Photo opportunity for non-profit and minimum total of $1,000 in eligible courtesy of the Government of Alberta. charitable organizations such as the cash donations from individual Canadian Hemochromatosis Society Albertans. The maximum grant (CHS) to receive a grant based on the available is $25,000 per year, up to total eligible cash donations received a maximum of $50,000 over three from individual Albertans over a years. 12-month period. • Based on what CHS has received and the available program funding, the Alberta provincial government will issue a grant that the Society can use to help support programs such as its Community Outreach and Information Seminars, the Physician Referral Network, and Patient Support.

Tel: 604 279 7135 | Toll Free: 1 877 BAD IRON | 3 A Million Great Ideas Bob Rogers, Canadian Hemochromatosis Society Executive Director and CEO

Elizabeth Minish, a Past President of the I am very pleased that in this issue of Iron population in Ontario too, CHS must make Canadian Hemochromatosis Society (CHS), Filings we can tell you the good news of new new inroads into delivering our services and once said to me, “Bob, over the years CHS has support from the province of Alberta. information there. The path to implementing received or thought of a million great ideas, but the one million great ideas may seem CHS doesn’t have the financial resources to do For the very first time, CHS has received a uphill and slow, but rest assured that every them”. With a budget of $175,000 in 2011 for Community Spirit Grant from Alberta’s Ministry new dollar CHS receives will be directed to all of CHS’s work in Canada, I understand that of Culture and Community Spirit, a grant based increasing the awareness of hemochromatosis, CHS has limited resources. However, every day upon the support and generosity of individual reducing suffering and saving lives. CHS is helping people all across the country donors in Alberta. This spring, I was thrilled to through our head office and the countless meet with the Honourable Gene Zwozdesky, I am wondering if you have considered volunteers who provide support to others. So, Minister of Health and Wellness for Alberta, helping others who need help. and George VanderBurg, MLA The Canadian Hemochromatosis for Whitecourt-Ste. Anne. The Society is a registered non-profit additional support we are charitable organization in Canada that receiving from Alberta this year depends upon individuals supporting will allow CHS to begin delivering its work. For as little as $10 a new and exciting information and month, you can help the Canadian awareness programs throughout Hemochromatosis Society provide Alberta starting this fall with the patient support and reach others who Primary Health Care Networks are at-risk for this disorder. near Calgary, Lethbridge and Medicine Hat. I hope when you read the articles and information in this newsletter, you will be CHS is currently seeking encouraged to support our mission throughout for funding from an Ontario Canada and make a vital difference foundation. With the large in the health of those who suffer from Celtic and Northern European hemochromatosis. Thank you a million times!

Hemochromatosis and Your Diet

The Canadian Hemochromatosis Society has recently had several requests to provide more information on diet and to promote the hemochromatosis cookbooks that are available on the market. In response, while certain cookbooks may be helpful in regulating iron intake and in the replenishment of nutrients lost through blood-lettings, CHS would like to emphasize that at no time will reducing iron in the diet replace phlebotomies as effective treatment for hemochromatosis. In the maintenance phase, restricting iron intake may increase the time between phlebotomies, but blood-lettings are still the best and most efficient method to remove the excess iron stored in one’s body. Dietary modifications that CHS encourages are:

Avoid iron supplements and foods Avoid alcohol. Alcohol enhances Drink plenty of fluids (water, juice, highly fortified in iron such as certain iron absorption and may harm a milk) before and after a phlebotomy to breakfast cereals. compromised liver. replace lost fluids.

Vitamin C increases non-heme iron Avoid or cook well raw seafood, deli More information on dietary (from vegetables) absorption. It is meats and soft cheeses, which can precautions and nutritional guidelines okay to consume fruits and vegetables carry harmful bacteria that can cause can be found on the CHS website, containing Vitamin C, but avoid Vitamin life threatening infections in people www.toomuchiron.ca. C supplements. Consider taking foods with hemochromatosis, especially those high in Vitamin C in between meals. in the de-ironing phase.

Calcium inhibits heme iron (from Enjoy a well balanced diet that includes meats) absorption and can be a wide variety of fruits and vegetables, consumed with meals. whole grains, low fat dairy products, meats and meat alternates.

4 | Canadian Hemochromatosis Society | www.toomuchiron.ca Spotlight on Volunteers - Alberta CHS Snapshots Calgary’s Commitment to the Cause By Anne Stang and Dr. Julie Cormacks.

When Anne Stang was diagnosed in 2005, were held in Anne’s home but now meetings her first thought was to inform her siblings, are in a rent-free room at a Co-op store. relatives and ethnic group, the Germans from Russia. Her first activity was to go to Anne and Julie continue to give talks her Saskatchewan birthplace where she to interested groups – seniors, cultural distributed over 400 pamphlets. societies, church women, service clubs, Canadian Blood Services, etc. The group Later, Anne was joined by Amanda Bennett has also volunteered at a local triathlon, and who wanted to help because her father has arranged for the professional printing died of hemochromatosis (HHC). Next was of CHS materials (a tri-fold display board, Julie Cormack who had just been diagnosed brochures and posters). Gert Madsen of Denmark (left) with with HHC. The three planned activities – “Our informal setup works for us,” says Anne. Canadian Hemochromatosis Society talks and displays at senior’s events and at “We all contribute ideas and take part in Executive Director Bob Rogers in the CHS malls. With time, more people contacted activities. Commitment to the cause has office. Gert, a hemochromatosis sufferer, the small group to help in activities and to been the driving force behind our efforts.” exhibited symptoms caused by excess iron be informed. CHS’s Facebook page brought in the endocrine system: hypothyroidism, four new members, one of whom designed Interested in volunteering in Calgary? feeling cold, hair loss or early graying, a very attractive t-shirt. The first meetings Contact Anne Stang at [email protected]. fatigue, depression, confusion and memory loss. Gert visited with Bob in late April to gather information and ideas on forming a hemochromatosis association in his home country. Edmonton Needs Your Help Thank You to Some of CHS’ If you are passionate about furthering the Active Alberta Volunteers awareness of hereditary hemochromatosis The Canadian Hemochromatosis Society in and around the Edmonton thanks all volunteers in Alberta for area, CHS needs you! supporting the hemochromatosis cause. Donnalea Ferguson is Special recognition goes to: Ben McEwen, CHS’ volunteer Regional whose active volunteer work in Alberta Coordinator in Edmonton, was instrumental in the development of and replaces long serving the provincial protocols for the screening volunteer and past board and management of hemochromatosis; member Ben McEwen. Marjorie McKinnon, who lead the process Donnalea and a small group that resulted in CHS becoming an annual of volunteers will soon be planning activities recipient of funds from the Cremona for 2012. If you can help, please contact her & District Community Chest; Stephen at [email protected]. Williams, who aids in the translations of CHS newsletters and other media into French; Lacombe Group and Rayne Kuntz, past board member and Interested volunteers in the Lacombe current member of the Communications area can contact Pryna Koberstein at Task Group. [email protected]. Pryna has been very active in the past with awareness activities Volunteer Jean Gatan with Tony Barradas, and was featured in the Fall 2007 issue of London Drugs Sales Supervisor. Jean Iron Filings. provided hemochromatosis awareness at the London Drugs store at Ironwood Plaza in Richmond, BC in conjunction with the Canadian Blood Services Bloodmobile which was also holding a blood donation clinic at the store.

Tel: 604 279 7135 | Toll Free: 1 877 BAD IRON | 5 UPDATE FROM THE BioIron Conference

Many students and researchers from around International Alliance of Hemochromatosis award by Dr. Tomas Ganz, president of the the world descended upon Vancouver, Associations (IAHA). Together as an International BioIron Society. BC to present their papers at the Fourth international organization, the group will Congress of the International BioIron have a larger pool of resources and people Marie founded the Canadian Society. Presentations included cutting- with which to create a stronger voice for Hemochromatosis Society in 1980, edge advances in iron biology, iron-related all hemochromatosis patients worldwide. and consequently established the disorders, and diagnostics and therapies The Canadian Hemochromatosis Society is Haemochromatosis Society of South related to these disorders. Recent advances extremely pleased to be a founding partner Africa and the International Association in the understanding of the molecular of the IAHA. of Haemochromatosis Societies. Marie’s basis of iron disorders are leading to new beloved husband, Tom Warder, passed away experimental therapies directed at iron- Marie Warder Awarded for Lifetime at age 67 due to complications caused by restrictive anemias and iron overload Achievement hemochromatosis. [For more photos of the disorders. In front of 200 guests of the International awards dinner, visit blog.toomuchiron.ca.] BioIron Society Awards Dinner held on May Key-note speaker, Dr. Michael Hayden, 27, 2011, Marie Warder accepted a Lifetime Killam Professor of Medical Genetics and the Achievement Award for her work in furthering Canada Research Chair in Human Genetics awareness of hemochromatosis within at the University of British Columbia, spoke Canada and internationally. to the significance of “black swan” events in “I don’t really feel like I deserve this because genetic research, where research directed I don’t recall doing anything except putting to looking at “exceptional patients” may give one foot in front of the other over a period a unique insight into human biology and of years,” said Marie humbly. “I feel it was eventual treatment strategies for disorders of more of divine intervention that these things iron metabolism. happened,” she said, referring to the help she received from numerous authorities The Canadian Hemochromatosis Society on iron overload that enabled her to gain was present amongst the international the knowledge she needed to help others community of hemochromatosis patient affected by hemochromatosis. associations, and together held a symposium to discuss the opportunities and challenges Dr. Samuel Krikler, a longtime friend and each country faces in garnering public supporter of Marie, and Bob Rogers, awareness and support. The symposium the Executive Director of the Canadian concluded with the group agreeing in Hemochromatosis Society, paid a tribute to principle to the formation of the new Marie before she was presented with the

Attendees and representatives from international and local hemochromatosis associations at the inaugural IAHA meeting

6 | Canadian Hemochromatosis Society | www.toomuchiron.ca Alberta Top Blood Collection Region The Canadian Hemochromatosis Society is a member of Canadian in Western Canada Blood Services’ “Partners for Life” program. If you are in the maintenance In the Society’s ongoing efforts to inform hemochromatosis patients phase, you can team up with the Society to save more lives. Here’s what in the maintenance phase of their treatment that they may be eligible you need to do to donate your blood to donate their blood, CHS is pleased to bring you the following article through CHS: from Canadian Blood Services. 1. Have the CHS Partner ID # ready. Home to thousands of committed blood in Alberta regularly send red blood cells and This # is CANA002257. donors, Alberta is Canadian Blood Services’ platelets to the B.C. & Yukon Region to be used third largest blood collection region across the in B.C. hospitals. 2. Register online by going to our country, and largest in Western Canada. website at www.toomuchiron.ca Alberta is also the hub for the testing of all and clicking on the link that says The western province is home to blood donations collected across Western CBS Partners for Life Registration 68,000 active blood donors who donate about Canada. Samples from each unit collected in Form found in the column to the 145,000 units of blood each year. With four B.C., Alberta, Saskatchewan, and Manitoba are right on the home page. This is a permanent clinics in Edmonton, Calgary, Red transported to the Western Consolidated Donor “one time” process. Once you are Deer, and Lethbridge, Testing Laboratory in Calgary on a daily basis to registered, your blood donations as well as more than 600 mobile be tested for infectious diseases. All donations will automatically be tracked each clinics that run across the province each must pass testing before being released into time you donate blood. year, Canadian Blood Services provides many Canadian Blood Services’ national inventory of opportunities for Albertans to donate blood. blood products. 3. Call 1 888 2 DONATE to book an appointment. As one of the blood agency’s larger collection Clinics in Alberta are always in need of more areas, Alberta is also responsible for donors. To donate blood in Alberta, visit supporting the needs of other regions, such as www.blood.ca or call 1 888 2 DONATE its western neighbour, British Columbia. Sites (1-888-236-6283) to find a clinic near you. The Ins and Outs of the Phlebotomy Bag Have you ever looked closely at the blood collection bag used for a therapeutic phlebotomy? At a glance it might not look like much more that a sandwich bag with a needle attached. Let us take a closer look…

The phlebotomy procedure itself has evolved Western Canada for Macopharma, describes beyond leeches and simply draining random some of the safety features available on amounts of blood into a pan, to a very the variety of phlebotomy bags available precisely monitored and safe procedure. throughout Canada. the actual need for a phlebotomy. An Macopharma is a global supplier of “There are a wide number of collection bags infusion site is also a nice feature available collection bags designed specifically for available on the market today, the majority on some bags. This will again reduce blood collection and production, as well of which aim to increase the efficiency of the need for a second venepuncture if as therapeutic phlebotomies. In Canada, the phlebotomy procedure, while of course, the patient needs a fluid top up after the you can find these phlebotomy bags in use protecting the safety of both the patient and procedure. Last but certainly not least, a in six provinces and approximately 100 hospital staff. needle guard is mandatory in most provinces hospitals across the country. The vast to protect the hospital staff from a needle majority of these bags are used to treat First of all, the bag should ideally be latex stick injury after the procedure is complete.” Hemochromatosis patients. free due to sensitivities and allergies. The bag may have graduation marks on it to Thankfully, shopping for a phlebotomy bag Safety is a growing concern in all industries, improve the accuracy of the volume bled is not something the patient has to include and the medical field is no different. from the patient. An integrated sampling on their grocery list. Health Authorities are Products are designed and engineered device to obtain blood specimens for testing constantly upgrading and looking for the around patient comfort and safety. The and blood analysis is an added bonus. This safest available product. However, perhaps safety of the staff member handling the will, in some cases, reduce the need for a this article will simply make you more aware product is equally as important. second venepuncture. However, in some of the research and development that goes Susan Stratton-Penney, Sales Manager of cases blood testing is required to determine into the simple ‘life saving’ sandwich bag.

Tel: 604 279 7135 | Toll Free: 1 877 BAD IRON | 7 Casino Support Rocks CHS

Bob Rogers, Canadian Hemochromatosis Society (CHS) Executive Director and CEO (left), accepts cheque from Rick Duff, River Rock Casino Resort General Manager, Casino Operations. August 18th proved lucky for CHS as it was the day that the Society was presented with $2500 from the River Rock Casino, part of Great Canadian Gaming Corporation. “River Rock Casino Resort is proud to support the Canadian Hemochromatosis Society in their efforts to spread awareness of this potentially fatal disorder,” said Duff. CHS thanks River Rock Casino and Great Canadian Gaming Corp. for their generous community spirit.

CHS Updates

New Address McQuiggan takes on the additional role of Sharon will coordinate and support other As of September 1st, the CHS head office Treasurer on the Executive Committee. volunteers in her region in their awareness has a new address. Located four doors down raising efforts. from the previous office, CHS’ new home Returning directors are Frank Erschen of is located in a slightly larger space but still Thornhill, Ontario, as President and Chair “I sincerely look forward to working with within the same building that houses other of the Board, Gloria Haché of Ottawa, each and every one of the volunteers non-profit community service agencies. Ontario, Pat McParland of Vancouver, who are willing to donate their time and BC, and Sabrina Meherally of Richmond, energy to help educate people about When sending correspondence or making a BC. Positions currently vacant on the hemochromatosis,” says Sharon. donation to CHS, please change the address Executive Committee are Vice President on the return envelope to reflect the new and Secretary. “Together we will be able to bring address: awareness to the general population as New Regional Coordinator in well as medical professionals.” #285-7000 Minoru Blvd. British Columbia Richmond, BC CHS is pleased to If you live in the Thompson Okanagan or in V6Y 3Z5 introduce Sharon Slager Prince George, and wish to raise awareness as the new volunteer of hereditary hemochromatosis in your New Board of Directors Regional Coordinator home town, please contact Sharon by email The Canadian Hemochromatosis Society for the BC Thompson at [email protected] or by phone at elected a new national Board of Directors Okanagan region and 250.462.7217. at its Annual General Meeting held in June. Prince George. Sharon hails from Oliver, New directors include Warren Funt, Patrick BC, having recently moved there from Haney, David Lloyd, and Kelly McQuiggan Prince George where she served for 12 all of Vancouver, British Columbia, Dr. ½ years as the Executive Officer for the Samuel Krikler of Richmond, BC, and Canadian Home Builders Association – Shannon Haney of Okotoks, Alberta. Kelly Northern BC. In her new voluntary role,

8 | Canadian Hemochromatosis Society | www.toomuchiron.ca