HepC BC
Hi Everyone, Greetings from Nala Paqu, the youngest family member (we think) of the Hepatitis C Society of Canada! Before everyone runs out for an atlas to find out where this community is to be found, however, we have a wee confession to make. Our two initial meetings held in Nanaimo (where the regional hospital is located), soon established that just as many identified Hep C'ers live in Qualicum Beach and Parksville to the north as in Ladysmith through Nanaimo in the south. Consequently, we are committed to establishing two chapters, but in the interim are referring to ourselves as NAnaimo/LAdysmith/PArksville/QUalicu m Beach, or Nala Paqu for short.
Nala Paqu has come into its own thanks largely to oodles of volunteer time and effort by our very own Ria Klomp, spurred on by David Smith from Victoria Chapter. Although a number of us also began as members of Victoria Chapter, we found the travel and communications distance made it difficult to contribute to/ benefit from HeCSC objectives of support, education, research and advocacy from afar. Consequently, with Ria's careful nurturing of David's seeds of encouragement "to grow locally", we are now flowering into two additional Central Island chapters! David attended our September meeting to spread the national and provincial word about the shocking story of Hep C, as well as to motivate our organizational drive. Thereafter, Ria and I with Helen's assistance in the south and Dave's help on many occasions, have been busily promoting Nala Paqu and the Hep C cause via word of mouth, posters about town, media advertisements, three radio sessions and two newspaper interviews during an especially busy period of some three weeks!
Somehow, David also made time to further encourage us by bringing his wealth of information and positive message to our October 16th founding meeting. THANKS loads for everything, David! At this meeting, guest speaker Public Health Nurse Mary Anderson also did a super job of advising us on: the vital role of our liver in maintaining good health, blood tests which detect the Hep C virus, liver function tests, and monitoring our Hep C. Bless her, she also ended with some very positive, practical advice on how we can deal with this chronic illness by helping ourselves to get healthy!
As I'm writing these Notes, a radio news item is announcing the Nova Scotia government will undertake to contact 20,000 transfused persons who may have received blood tainted with the hepatitis C virus. Once again the sheer magnitude of the numbers and the shocking physical, emotional, and financial suffering and loss these represent is numbing! But the volume of the combined voices of all who are infected and affected shall be just that much the louder!
Here's to a powerful and productive Annual General Meeting and Krever Report later this month. Together, let's teach the world to LISTEN as well as to SING!
Best wishes,
TED - a fellow member of "the Hep C Generation"
ablation- the removal of a part, especially by cutting. etiology- the theory of the cause of disease.
carcinoma- a malignant new growth that ends to infiltrate the surrounding tissue.
cryoglobulinemia- presence of cryoglobulins in the serum.
cryoglobulins- a serum globulin that crystallizes at low temperatures.
globulins- a class of proteins.
hepatocellular- pertaining to or affecting liver cells.
homeostatic- to keep things stable in the body.
lymphoma- a general term referring to any cancer of the lymph tissue.
monocytes- a type of white blood cell (leukocyte).
osteoporosis- bone disease in which the matrix of the bone is altered.
purpura- depending on the cause this skin condition can manifest as easy bruising, wheals or itching.
by Darlene Morrow, BSc
Peripheral Neuropathy (PN) is a condition in which pain or tingling is observed in the limbs. Typically the hands, legs and feet are involved. The pain is from nerve involvement and can range from mild to severe. The sensations can include shooting pain, burning, tingling and numbness. There are many different causes for this condition and they include diabetes, mixed cryoglobulinemia, HCV, Vitamin B6 or B12 deficiency, decreased thyroid function, acute porphyria and reactions to drugs.
The prevalence of hepatitis C virus (HCV) infection has been estimated at 43 to 84% in patients with essential mixed cryoglobulinemia. Cryoglobulins are proteins that form crystals at low temperatures. These crystals can damage the filtering apparatus of the kidneys and cause excessive protein leakage into the urine, plug up and inflame the small blood vessels in the skin (causing painful ulcerations), and interfere with the nerves in the hands and feet (causing tingling and numbness).
Some purpura has been successfully treated with interferon-alpha which lowers the amount of cryoglobulins. However existing nerve damage is rarely reversible. And the interferon can rarely cause a worsening of the neuropathy. Furthermore, in a small percentage of the population, interferon can also cause thyroid abnormalities which can also be a cause of PN.
Nucleoside analogs often cause a transient PN. Ribavirin is a nucleoside analog. While it has not been associated with PN I think it is important to consider all possible causes particularly when it is usually given in conjunction with interferon.
SOME THINGS TO CONSIDER IF YOU SUFFER FROM THIS PROBLEM:
1. See your doctor. Blood tests can rule out cryoglobulinemia and other auto- immune causes. Also discuss B6, B12 or alpha lipoic acid (an anti-oxidant) supplementation with either your doctor or naturopath. Alpha lipoic acid has been used in the temporary treatment of peripheral neuropathy. Long term usage is not recommended.
2. Avoid sitting or standing for long periods.
3. Don't stop exercising. While you may associate the pain with exercise, it is in fact helping to keep muscle tone and increase your body's sensitivity to insulin which is important in diabetes. Swimming is an excellent option as it reduces the pressure on the legs. Cycling exercises your legs without injuring your feet. Rowing is also easier on your feet, and because you're sitting down you don't have to worry about poor balance due to neuropathy.
Are older people more susceptible to viruses? L. Rink, from the University of Lubeck in Germany thinks so. He says that elderly people are more apt to catch viral infections than are younger adults. When a virus strikes, our bodies' natural interferons enter the picture. Interferons are proteins that fight against invaders such as viruses, so that they won't multiply. They get our immune system into battle mode. In his article "Zinc supplementation reconstitutes the production of interferon-alpha by leukocytes from elderly persons," Rink reports that he and his colleagues studied the white blood cells of 16 people. Their average age was 72 years. Those people produced less interferon when infected with a virus than did 16 young adults with an average age of 28. The interferon produced came from monocytes. Interestingly, he found another monocyte product, interleukin-6 (IL-6) in greater amounts in the cells of the older people than in those of the younger ones. The author concludes that the elderly do not have a defect in their monocytes. There have been reports, according to the author, that a weakened immune system in older patients seems to be associated with a zinc deficiency. When they supplemented their white blood cells with zinc (15 mu M), however, they produced interferon in amounts similar to the younger adults. This seems to indicate that zinc may help older patients to fight off viruses. Be sure to check with your physician before taking any supplements.
>From an article by: L RINK, UNIV LUBECK, SCH MED, INST IMMUNOL & TRANSFUS MED,RATZEBURGER ALLEE160 D-23538 LUBECK, GERMANY
Source: JOURNAL OF INTERFERON AND CYTOKINE RESEARCH 1997 AUG;17(8):469- 472
ADVOCACY ANNOUNCEMENT -CLASS ACTION SUITS:
BRITISH COLUMBIA
Camp Church and Associates Sharon Matthews / Kim Graham 4th Floor, Randall Building Vancouver, B.C. V6B 1Z5 1-800-689-2322
Lemer Kambas Bruce Lemer Suite 1550,625 Howe Street Vancouver, B.C. V6C 2T6 (604) 669-4004
Before 1986 and after 1990 Klein Lyons David A Klein 805 West Broadway, Suite 500 Vancouver, B.C. V5Z 1K1 (604)874-7171 (604)874-7180 (FAX)
also:
Dempster, Dermody, Riley and Buntain William Dermody 4 Hughson Street South, 2nd Floor Hamilton, Ontario L8N 3Z1 (905) 572- 6688
The toll free number to get you in touch with the Hepatitis C Counsel is 1-(800)- 229-LEAD (5323). It may not be working yet so please be patient.
This information is for anyone who has received blood transfusions in Canada, if they wish to find out if their donors were Hep C positive.
TRACEBACK INQUIRIES
Contact: Dr. Lisa Jeppesen, Dr. P Doyle,or Glenda The Canadian Red Cross Society 4750 Oak Street Vancouver, BC, V6H 2N9 1-888-332-5663 (local 207)
This column is a response to requests for a personal classified section in our news bulletin. Here is how it works:
To place an ad: Write it up! Max. 50 words. Deadline is the 15th of each month and the ad will run for two months. We'd like a $10 donation, if you can afford it. Send checks payable to HeCSC Victoria Chapter, and mail to R. Hicks, Box 263-453 Head St., Victoria, BC V9A 5S1. Give us you name, tel. no., and address.
To respond to an ad: Place your written response in a separate, sealed envelope with nothing on it but the number from the top left corner of the ad to which you are responding. Put that envelope inside a second one, along with your check for a donation of $2, if you can afford it. Mail to the same address as above.
Disclaimer: R. Hicks and/or HeCSC cannot be held responsible for any interaction between parties brought about by this column.
Ad no. 1 Life should be an adventure. If you are female, 35/40ish, know how to sail or would like to learn, and love life, I live on a comfy sailboat with a spectacular view of Victoria Harbour. I am trim, fit, and my mom says I'm handsome. Let's talk about the possibilities!
Ad no. 3 SF/S/ND 5'5", 110 lbs., Canadian, seeks Lady/Gent. 55-65, honest, with good sense of humor, needed for companionship. I am a single lady who enjoys camping, travel, nature, as well as music, cooking, garden, etc. Will answer all positive replies. Life is worth living even with Hep C.
Ad no. 4 SWM Italian, 33yrs. Life's too short to be alone. If you are a female 25/34 looking for love, understanding, and a shoulder to cry on, I'm here. I love all music, esp. country, horseback riding, walks along the lake late at night looking at the stars and dream. Once in a lifetime opportunity.
DISCLAIMER: HeCSS cannot endorse any physician, product or treatment. The guests invited to our group to speak, do so to add to our information only. What they say should not necessarily be considered medical advice, unless they are medical doctors. The information you receive may help you make an informed decision. Please consult with your health practitioner before considering any therapy or therapy protocol. The opinions expressed in this newsletter are not necessarily those of the organization.
The deadline for any contributions to the next issue of hepc.bull is November 22nd. Please contact: Joan Diemecke at Tel/FAX (250) 479- 5290 or Darlene Morrow at FAX (604) 987-7396 1203 Plateau Drive, North Vancouver, BC, V7P 2J3
email: pdiemecke@compuserve.com or hepcbc@sprint.ca
The editors reserve the right to edit and cut articles in the interest of space.
Victoria Chapter would like to give a great big thank you to Judith Fry for organizing the raffle, and thanks to all who bought tickets. The raffle brought in a grand total of $654.65.
Victoria Chapter Meetings: Last Wednesday of each month 1 - 3 PM, and again at 7-9 PM, St. John the Divine Church Lounge,1611 Quadra St. (Entrance through the rear, marked Annex)
NEXT MEETINGS: Oct. 29th: Speaker Arnie Lade, TCM/herbalist. Nov. 26th: Laurie Fortier, Nutritionist.
Vancouver Chapter Meetings: Second Thursday of every month. 7:30pm, 5745 Wales Street, at the First Lutheran Church, Vancouver. (between Nanaimo & 42nd on Wales Street)
NEXT MEETING Nov. 13th.
Penticton Chapter Meetings: Third Thursday of every month, 7-9 PM, Penticton Health Unit - Board rooms.
NEXT MEETING: NOTE: Nov. 27th.
Kelowna Chapter Meetings: Last Saturday of every month, 1-3 PM, Rose Avenue Education Room in Kelowna General Hospital.
NEXT MEETING: Nov. 29th
Nanaimo Chapter Meetings: Second Thursday of every month, 7 PM, Health Unit-Central Vancouver Island, 1665 Grant St.
NEXT MEETING: Nov. 13th
CO-EDITORS
Joan Diemecke TEL&FAX:(250) 479-5290
Darlene Morrow FAX:(604) 987-7396
VICTORIA CHAPTER OFFICE: TEL:388-4311
VANCOUVER CHAPTER
HERB MOELLER TEL:241-7766
PENTICTON CHAPTER:
LESLIE GIBBENHUCK TEL:490-9054
KELOWNA CHAPTER:
ELAINE RISELY TEL:768-3573
CASTLEGAR/GRAND FORKS/TRAIL:
ROBIN TOMLIN TEL:365- 6137
NALA PAQU CHAPTERS:
RIA KLOMP TEL:248-6072 (Parksville)
TED KILLOUG TEL:752-1718 (Qualicum Beach)
gjones@qb.island.net (Gary Joneson)
HELEN HUBBART TEL:245-8759