Category:

Cystic fibrosis

The president highlights the remarkable evolution of the CF community since the foundation of the organization, announces the official opening of membership for the families of people with CF and invites the entire community to become a member in order to strengthen participation, representation and collective support.

The data suggests that, despite common inflammatory mechanisms, people with cystic fibrosis may present a form of COVID-19 that is often less severe than expected, possibly thanks to cellular characteristics of CF and the potential protective effect of CFTR modulators.

A clear reminder of the recommended order to optimize the effectiveness of inhaled treatments and medications for people living with cystic fibrosis, from bronchodilators to antibiotics.

The Fall 2024 issue of Santé Vous Bien highlights the inspiring journeys of people living with cystic fibrosis, from climbing Mount Kilimanjaro to lung transplantation, sports, literature, and research to show that CF does not set limits to the heights that can be reached.

The inspiring story of Marc-Antoine Pelège, an athlete and osteopath living with cystic fibrosis, who tells the story of his ascent of Kilimanjaro step by step as a symbol of overcoming, resilience and hope for the entire CF community.

A file that traces the major advances in lung transplantation for people with cystic fibrosis, highlighting their resilience, the evolution of transplant criteria and the major impact of treatments such as Trikafta.

An inspiring portrait of Justin Ducharme, a professional hockey player living with cystic fibrosis, who is turning his condition into a driver of performance and pursuing his dream of reaching the NHL.

Living with Cystic Fibrosis is launching a survey to better understand the needs of the CF community and adapt its services, with a draw for a $50 gift certificate to be won.

An interview with Jean-Christophe Réhel on L'Air d'aller, a bright and daring series that addresses cystic fibrosis with humor, friendship and sensitivity.

An intimate and poetic text on the vertigo of life after a lung transplant, between gratitude, loss of bearings and the search for meaning.

Clear answers from a pulmonologist to frequently asked questions from adults living with cystic fibrosis about thrush, venous catheters, alcohol, and some medications.

Quebec study drawing up a current socio-demographic portrait of people living with cystic fibrosis in order to better adapt services and defend their rights.

This 2022 update presents the major advances in cystic fibrosis research, marked by the arrival of CFTR modulators (ETI/Trikafta), their major benefits, emerging clinical challenges and research paths for ineligible people.

This article takes stock of the possible links between CFTR modulators, in particular Trikafta, and mental health, by exploring indirect psychological effects, possible biological mechanisms, drug interactions, and the importance of individualized follow-up.

This article explores the psychological and identity upheavals experienced by people with cystic fibrosis in the Trikafta era, between immense hope, social pressures, past griefs and the need to reinvent themselves in the face of a suddenly possible future.

A series of clear medical answers to common questions from people living with cystic fibrosis, addressing fermented foods, kidney stones, thrush, halitosis, premenopause, and precautions before surgery.

Cystic fibrosis can affect mental health, but anxiety and depression can be effectively managed through information, support, psychotherapy, and, if necessary, medication.

Research has profoundly improved the prognosis of cystic fibrosis thanks to CFTR modulators, with new hope for all patients despite challenges in accessing treatments.

A teenager with cystic fibrosis testifies that her adolescence is not “ordinary”, but that by accepting her difference, she found strength, identity and pride in her journey.

In a context of pandemic and uncertainty, this word highlights the resilience, solidarity and unity of a community that adapts, helps each other and comes out stronger.

The call for applications for the 2020 Michel Paquette Prize is launched in order to recognize a person or organization that has made a remarkable contribution to the field of cystic fibrosis, with a presentation scheduled for October 2020.

As of 19 March 2020, vulnerable people can request financial assistance through the COVID-19 temporary worker assistance program.

CEO Tomy-Richard Leboeuf-McGregor died after several days in a coma, leaving a significant impact within the cystic fibrosis community.

The “crude” form of cystic fibrosis is a mild form, often diagnosed in adulthood, associated with partially functional CFTR mutations, with little or no digestive impairment and a respiratory evolution that is generally slow and favorable.

Horseback riding is generally safe and beneficial for people with cystic fibrosis, except in cases of horse allergy, with particular attention to hygiene to limit the risk of infection.

Neonatal screening for cystic fibrosis would allow Quebec to diagnose the disease at birth, to establish early care and to prevent avoidable nutritional and pulmonary complications, as is already the case in the majority of western countries and Canadian provinces.

A clinician traces the evolution of cystic fibrosis, from rudimentary treatments and very limited survival to major advances in care, research and quality of life, while stressing that despite remarkable progress, the fight is not yet over.

Cystic fibrosis hemoptysis is mainly caused by lung infection and inflammation, sometimes requires a temporary adaptation of physical activity, and is not prevented by hypotoxic diets.

The article presents major advances in research targeting the CFTR protein, with innovative therapies (ivacaftor, lumacaftor and combinations) that pave the way for a gradual correction of the very cause of cystic fibrosis.

New emerging pathogens in cystic fibrosis (MRSA, Stenotrophomonas maltophilia, and Achromobacter xylosoxidans) are becoming more and more frequent, but their exact impact on lung function and survival is still partially unclear.

An overview of the history of cystic fibrosis, from early ancient observations to modern medical advances.

Through the experience of a mother and her seriously ill son, this article invites us to reflect on the relationship to time, the importance of the present moment and the positive traces that each person leaves in the lives of others.

During adolescence, risk taking is part of development, but for young people living with cystic fibrosis, it requires careful support to protect physical and psychological health.

A rich and adapted diet is essential in cystic fibrosis to maintain good growth, support lung function and prevent complications.

Sarah Dettmers tells how her personal and family journey led her to become a committed ambassador for cystic fibrosis, between awareness, resilience and the urgency to live.

Diagnosed as a teenager, Charlène shares how she learned to live with cystic fibrosis while achieving her personal, professional and sporting dreams, with determination and hope.

Hemoptysis, common in cystic fibrosis, corresponds to the expectoration of blood and requires a rapid evaluation in order to determine its severity and the course of action to be taken.

A look back at the major advances in cystic fibrosis research presented at the 2016 North American Conference, in particular the identification of the CFTR gene and the development of treatments that target the fundamental defect of the disease.

A clear overview of the main techniques and devices for decluttering the airways in cystic fibrosis, their advantages, limitations and clinical effectiveness.

An exploration of complementary practices such as yoga, breathing, meditation and sophrology to better live with cystic fibrosis, by supporting the body and mind on a daily basis.

Atypical cystic fibrosis is a milder and often late form of the disease, sometimes diagnosed in adulthood due to symptoms that are less pronounced or restricted to a single organ.

The social worker in a cystic fibrosis clinic accompanies patients in psychological, social and personal challenges in order to support their adaptation to the disease and their quality of life.

Smoking, active or passive, significantly increases the risk of complications, rejection and mortality in transplant recipients by disrupting immune mechanisms.

Dr. Yves Berthiaume looks back on his 25 years working with people living with cystic fibrosis and sends them a message of goodbye filled with recognition, humanity and gratitude.

A teenager living with cystic fibrosis testifies to his daily struggle and calls for equitable access to an approved medication that could slow the progression of his disease.

Receiving a lung transplant at only 15 years old, Odile Lefrancois shares with lucidity and sensitivity how this ordeal transformed her vision of life, the future and the risk of believing in a second chance.

The year 2017 marked a major turning point in cystic fibrosis, with promising advances towards combination therapies capable of correcting the genetic defect in the majority of people affected.

This testimony shows that adoption via mixed banking can be experienced within a reasonable time and become a profoundly positive experience, even after the loss of a pregnancy.

Being a foster family involves close support from the DPJ, strict respect for confidentiality and the creation of a secure cocoon to promote the child's attachment.

After the accreditation, we are waiting for the match call. The time frame varies, but when it arrives, everything accelerates and a new story begins.

Cystic fibrosis does not prevent adoption, but health and medical advice are decisive.

Inventor of the Frequencer and a leading figure in the FK community, Louis Plante leaves a lasting legacy of innovation, courage and hope.

A couple tells the story of waiting for a lung transplant, the call that changes everything, and the strength of letting go when life offers a second chance.

A touching testimony on in vitro fertilization, infertility linked to cystic fibrosis and the long road traveled to realize the dream of becoming a parent.

An inspiring testimony about discipline, self-improvement and the transformation of a dream into victory despite cystic fibrosis.

A practical and educational text on deep physiological breathing and the importance of exhalation in supporting breath, tone and expectoration in people living with CF.

The journey of a woman with cystic fibrosis whose hope, love and motherhood come together.

An intimate look at life choices, love, and resilience with cystic fibrosis.

A look back on 30 years of commitment, humanity and transformation of the reality of adults with cystic fibrosis in Quebec.

A heartfelt final word about motherhood, illness, and the choice to live to the fullest.

When food changes babies' sleep... and their mothers' health.

Waiting for the sweaty test and the relief of a reassuring verdict.

When sickness, breastfeeding, and postpartum collide.

Living and adjusting to nights with twins.

The organization, adaptation, and survival of the first few weeks with twins, while the spouse quickly returns to work.

A testimony about the fragile balance between self-care, motherhood, and cystic fibrosis in the first weeks with twins.

The relief and the sweetness of a reunion after a hectic start to life.

A testimony on the late diagnosis of cystic fibrosis, motherhood, hospitalizations and learning to live differently.

An intense relief thanks to the epidural, followed by a critical moment leading to the birth of the first twin.

Diagnosed at 58 after a life marked by unexplained symptoms, Claire testifies to atypical cystic fibrosis, diagnostic error and the importance of raising awareness about this little-known form of the disease.

Beginning of the birth story: between excitement, medical induction and the gradual rise of contractions, this first part tells the story of entering labor and the first hours in the hospital.

How to build a birth plan when pregnancy is at risk and when priority is still the most important thing.

Despite a risky pregnancy marked by anxiety, this assessment looks back on a surprisingly smooth experience, physically and emotionally, until the very last weeks.

Interview with an ENT specialist in cystic fibrosis to better understand the role of the sinuses, common problems in people with CF and treatment options, including surgery.

A testimony on the conscious choice to live better at the end of a risky twin pregnancy, between improving health, good medical news and refocusing on well-being.

When the body feels better, the mind follows: this testimony explores the unexpected effect of intravenous antibiotics on well-being during a risky pregnancy.

Between forced rest, guilt and hyperactivity on the part of the spouse, this testimony shows how organization and communication make it possible to function as a team during a risky pregnancy.

Through the ordeal experienced by another woman with cystic fibrosis, this testimony shows how comparison can sometimes become a source of perspective, gratitude and strength.

A testimony about the persistent anxiety, guilt and restrictions experienced after the 24th week of a risky twin pregnancy.

Between trial, error and frustration, this testimony shows how learning to use insulin made it possible to regain control of gestational diabetes with cystic fibrosis.

Between cystic fibrosis, twin pregnancy and gestational diabetes, this testimony tells the story of the nutritional impasse, maternal guilt and the relief of finally finding a suitable solution.

A testimony on the fear, medical follow-up and fragility experienced during a high-risk twin pregnancy.

A testimony on a risky twin pregnancy, waiting in the emergency room and the fear of a miscarriage.

Christine shares the experience of loving a man with cystic fibrosis: love, fear, powerlessness, but above all the life chosen in the present. A touching testimony on the role of loved ones.

Follow-up of a high-risk pregnancy in a woman with cystic fibrosis pregnant with twins.

Pregnancy with cystic fibrosis, the fear of medication and the importance of putting your health first.

What if love and health were not rewards to be expected, but states to be cultivated? A sensitive reflection on self-love, openness to life and the meaning of the trials we are going through.

A testimony on cystic fibrosis, overwork, work stoppage and lung transplantation, between the quest for performance and the redefinition of oneself.

A testimony about cystic fibrosis, mental health, and the inner strength needed to transform your life, one step at a time.

Analysis of the effects of Bill 20 on access to assisted reproduction for people living with cystic fibrosis in Quebec.

A lucid testimony on the psychological, financial and social challenges experienced after a lung transplant.

A nuanced look at sexuality, relationships and fertility when living with cystic fibrosis.

Testimony of a woman pregnant with twins confronted with the limits of adaptations to work in agriculture and with the decisions of the CSST.

A twin pregnancy resulting from in vitro fertilization involves close medical follow-up due to increased risks, in particular prematurity and placental complications.

A viability ultrasound reveals a twin pregnancy resulting from a single transferred embryo, marking a moment that is both happy and full of medical uncertainty.

A reflection on the concept of “letting go” often imposed on people living with infertility, and on the real emotional journey leading to acceptance and openness to other parenting projects.

A testimony recounting a third attempt at in vitro fertilization experienced in emotional exhaustion, marked by measured hope, medical constraints and the personal need to close one chapter before opening another.