Cystic Fibrosis Resources
Cystic Fibrosis (CF) is a genetic disease that can be fatal affecting the digestive system and the lungs. At present there is no cure. There is an estimated one in every 3,600 children born in Canada with CF and more than 4,100 Canadian children, adolescents, and adults with cystic fibrosis attend CF clinics.
CF occurs when a child inherits two defective copies of the gene responsible for cystic fibrosis- one from each parent. Approximately 1 in 25 Canadians carry a one of these defective gene copies and do not have CF or any of the related symptoms.
What Are Its Symptoms?
There are a variety of symptoms associated with CF including:
- Persistent cough with productive phlegm
- Shortness of breath and wheezing
- Frequent lung infections like pneumonia or bronchitis
- Bowel issues including intestinal obstruction, with bulky or oily stools
- Poor weight gain in children, or weight loss in adults despite a healthy appetite
- Male infertility and decreased fertility in women
- Salty tasting sweat
Each individual experiences varying degrees of CF, however, persistent and ongoing infections in the lungs and destruction of the lungs with loss of lung function eventually leads to death in the majority of people with CF.
Complications From CF
- Difficulty digesting fats and proteins
- Inability to absorb nutrients leads to vitamin deficiencies and malnutrition
- Lung damage from chronic infections and inflammation
- Diabetes related to CF
- Chronic or recurring sinus infections
Resources For Cystic Fibrosis
For patients and caregivers alike, CF is a life changing diagnosis. Reaching out for the resources you or your loved ones need is an essential part of ensuring not just physical, but also emotional and mental health.
Cystic Fibrosis Canada
Cystic Fibrosis Canada is an excellent resource for those looking for information about CF, as a non-profit charitable organization its mission is to raise funds for research, innovation, and care. With over $244 million dollars being raised and invested in these avenues, Canadians have the highest median survival rates in the world.
In addition to the organizations mandate, healthcare options, how to get involved, finding a chapter nearest, introduction to treatments, virtual education programs for patients and caregivers (webinars), patient resources, and more.
CysticLife.org
CysticLife.org is a social network for the CF community focused on providing positive and uplifting atmosphere. It’s a place where people with CF, their family, and friends can share tips, ask questions, express ideas, offer experiences, and encouragement. Members can maintain a profile, post blogs, ask and answers questions, create polls, contact one another directly, and search for others within their community based on location, relation to CF, age, and gender.
CysticFibrosis.com
Cystic Fibrosis.com has over 18,000 community members in 122 countries with over 13, 000 newsletter subscribers. It’s aim to foster an online community for patients, caregivers, healthcare professionals, and industry service providers.
For patients and caregivers this resource is a great way to achieve participatory healthcare, share experiences, and look at possible solutions.
TipsForCFParents.com
Since CF is almost always diagnosed in children, its essential parents have the access to information and community resources. TipsForCFParents.com provides resources specifically for parents with young children including: stress management, caring for your infant with CF, teaching children about CF, sibling issues, funny stories for parents with kids with CF, marriages and couples information, and more.
For those affected by CF, Share Lawyers knows how important it is to have access to information, resources, community, and an outlet for your stories and questions.
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