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Patient Story: Living With Cystic Fibrosis

This article is part of a content series produced in meetings between bioMérieux and patients affected by antimicrobial resistance, a global health issue that is important to us and integral to our corporate mission.

The World Health Organization has declared antimicrobial resistance as one of the top 10 threats to global health. Mainly caused by the misuse or overdosage of antibiotics, antimicrobial resistance has disastrous clinical and financial consequences on the public health system.

Most cystic fibrosis patients are affected by antimicrobial resistance due to their frequent need to take antibiotics over the course of their medical treatment. From prevention to patient care, bioMérieux is a major player in the fight against antimicrobial resistance, developing and pioneering rapid diagnostic and antimicrobial stewardship solutions to help hospital centres quickly provide the appropriate therapy, which in turn considerably improves patients’ results.

bioMérieux: How were you diagnosed?

Raphaëlle: I was diagnosed when I was eight months old. My family noticed that I wasn’t eating much and wasn’t gaining much weight. The doctors were first aware there was a problem due to gastrointestinal symptoms, and they thought it may be celiac disease. Then, my grandmother noticed that I “tasted salty,” which is a common symptom of cystic fibrosis. Cystic fibrosis is actually diagnosed by the salt concentration in the patient’s sweat.

My parents then had genetic testing done to find out if they carried one or more of the cystic fibrosis genes. My mother is a carrier and my father has cystic fibrosis, but he carries a gene that makes his illness milder. For a child to develop it, both parents have to be carriers of one or more cystic fibrosis genes as they’re recessive. Just being a carrier has no impact on your health.

bioMérieux: What are your main symptoms?

Raphaëlle: I carry the delta F508 mutation, which accounts for over 70% of all CF cases. The symptoms of the disease are mainly caused by a thickening of the mucus, which becomes very viscous. This of course affects your lungs, and for me, it really affects my sinuses. The disease also affects your digestive system, preventing it from producing pancreatic enzymes, which are responsible for digestion. That’s why I don’t gain weight. I also have liver problems.

BioMérieux: How did you feel when you received your diagnosis and how did your treatment start?

Raphaëlle: I was young when they found out I had it, so I wasn’t really upset by my diagnosis. My mom cared for me until I became an adult and is still very present. She’s taken more distance from it now that I’m grown up, but it has been very difficult for her to see me sick.

I was diagnosed at Hôpital Anna-Laberge in Châteauguay and treated and monitored at Montréal Children’s Hospital from the beginning. I was in the children’s department until recently. The medical team caring for me was amazing. I’ve always had great support.

bioMérieux: What is your current medical care like? Have you experienced resistance from the repeated use of antibiotics?

Raphaëlle: I’ve had a lot of problems with my medications, especially the antibiotics against the bacteria that cause the symptoms of the disease.

I’ve had staph on my lungs, but the bacteria are mainly around my sinuses. I’ve had polyps three times and had several operations. Despite repeated rounds of antibiotics, it’s a persistent infection causing me a lot of migraines.

I’d like to be more confident about the course of these infections. Now that I’m no longer in the children’s department, the medical staff relies more on prognosis and symptoms than how I’m feeling.

Oral antibiotics stopped working after a month, so I suggested intravenous and it took me some time to get it. Every patient is different and not all medications are effective in the same way.

bioMérieux: What has it been liking facing the various challenges in your life? What have your hospitalizations been like?

These challenges actually made me want to become a nursing assistant, so I can give patients what’s been given to me throughout my life. The nurse who took care of me in the children’s department was a huge inspiration for the life I now have.

bioMérieux: How did the COVID-19 crisis affect your life?

Raphaëlle: I think what was hardest in the pandemic was my friends’ and family’s fear of giving me COVID. My mom was really scared and didn’t want me to go out.

I was also really scared for the first few months, but after three months, I went out, met my boyfriend and moved. I have a normal life because I don’t have to go to the hospital regularly.

I even ended up catching COVID and my experience wasn’t as bad as I expected. It didn’t affect my lungs, I was just really exhausted. Even now, I still sometimes feel out of breath, but I don’t know if that’s from COVID or cystic fibrosis.

bioMérieux: How do you feel today?

Raphaëlle: It was harder to accept my disease when I was younger since it’s degenerative and terminal. You quickly realize that everything you do affects your health. While other people my age drink alcohol and party late, I don’t drink and rarely go to parties to avoid making my health worse. I have to maintain a good sleep cycle and make my at-home nebulizer treatments a priority.

The hardest thing is that as patients, we can’t provide each other with mutual support without risking transmitting resistant bacteria to each other.

When I was in the hospital, I was with another young person with cystic fibrosis. We talked a lot over text. We were encouraged to seek each other to support each other and keep our spirits up, but we always had to wear masks, be outside, not touch anything and not use any of the same things. Unfortunately, he didn’t survive. It’s been extremely hard for me. In hindsight, I realize that seeing my friend fight one infection after another and various resistant bacteria was dangerous to both my physical and mental health.

Despite everything, I manage to live my life and enjoy it. I talk with a support group on Facebook called “S’unir pour guérir” [“Healing Together”]. There’s both patients and families who have just learned of their child’s illness and are looking for support.

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