TORONTO, April 2, 2014 /CNW/ - In cooperation with Fabry associations around the world, The Canadian Fabry Association (CFA) has declared April 5, 2014 International Fabry Women's Day. Each year, the first Saturday in April will serve to increase awareness and understanding of Fabry disease, in particular by emphasizing the often-misdiagnosed disease impact on women.
What is Fabry disease and how does it affect women?
Fabry disease is a genetic Lysosomal Storage Disorder that results in the abnormal deposit of a fatty substance in cells throughout the body. Until recently, it was believed that women were only carriers of the disease and that their children's health and not their own was affect by the disorder. This has proven to be wrong. It is now known that women also experience the many Fabry symptoms, including: severe pain; a disabling inability to sweat; skin rash; frequent diarrhea and constipation; kidney and heart problems; hearing loss; stroke and early death.
In announcing the first-ever International Fabry Disease Women's Day in Canada, Gina Costantino, President, CFA stated that, "The identification and treatment of women with Fabry Disease has been misunderstood and misdiagnosed for too long. International Fabry Women's Day aims to increase disease recognition and support for all women affected by Fabry Disease: mothers, siblings, caregivers, partners, family members and friends.
According to Fabry specialist, pediatrician Dr. Joe Clarke, "Traditionally women have been viewed as carriers only. Although the disease occurs less frequently, women with Fabry disease experience intense disease-related pain and symptoms, comparable to the distress and impairment that men experience."
In line with the goal of increasing awareness of women with the disorder, the 1st National Fabulous Females of Fabry Retreat will be held from September 26 through September 29, 2014 in Nova Scotia. Under the theme, Fabry in a Woman's Life will cover topics of concern to women: Fabry Disease, the body and Enzyme Replacement Therapy; Psychological effects of Fabry and family/patient coping tools; Dispelling the "carrier" myth, family planning, pregnancy and menopause; The Fabry 'Team' - patient empowerment, getting the care you deserve, support systems.
For details see: http://www.fabrycanada.com/ and to register for the Retreat contact: Sherry Sim, Event Manager, 1-866-655-8548 or firstname.lastname@example.org
The Canadian Fabry Association is a non-profit organization whose goal is to raise awareness and educate the Fabry community and the public about the disease. Consisting of a dedicated group of people who know what it's like to live with Fabry disease, the CFA undertakes provincial and national education and awareness meetings geared to promoting better understanding, management and treatment of Fabry disease.
SOURCE: Canadian Fabry Association
For further information: Gina Costantino, President, CFA, email@example.com, (905) 561-9198; Julia Strauss, Vice President, Patient Support, CFA, firstname.lastname@example.org, (807) 252-6388; Donna Strauss, CFA (Founding) Board Member, email@example.com, (519) 745-0106; http://www.fabrycanada.com; Source for interviews with Dr. Clarke: Charles Pitts, Oromedia, firstname.lastname@example.org, 514 697 9111