Cystic fibrosis CF is a genetic disease passed down from parents to a child that can affect many different organs in the body. More than 30, people are living with CF in the United States. Cystic fibrosis affects a chloride channel in the body. People with CF make mucus that is extra thick and sticky. It also causes problems with digestion processing food that is eaten. CF is a genetic disease. This means that the disease is passed down from both parents to a child; similar to the way a person inherits the color of their eyes, hair, and skin. You need two copies of this gene to have CF, one from your mother and one from your father. If you have only one copy of the CF gene, you are a carrier; you do not have CF disease but can pass the gene to any children you have.
Cf patients dating each other
The thick, sticky mucus that builds up in our lungs functions like silly puddy. As a result, people with CF harbor dangerous bacteria in their lungs and these bacteria are contagious only to other people with CF or compromised immune systems. The good news is CF is not at all contagious or dangerous to healthy people. The bad news is the cross infection risks mean people with CF are advised not to be within 6 feet of one another.
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After talking for a couple of days, they found out they both had cystic fibrosis. Due to the risks of cross-infection, they knew they could never meet, but remained virtual friends. Mahi: We matched and got to talking; I think I was talking about my day and what I had planned, and I mentioned I had to go to hospital in the morning. Oli: When she mentioned she had a chest infection and was going for a check up it was already a red flag for me, so I had no intention of meeting her until she was better.
From ages 17 to 24, I was with a wonderful person. It was us against the destructive titan, cystic fibrosis. We fought side by side, not against each other. Our relationship seemed untouchable, except by the trial of me getting better, healthier. The dependency was suddenly unnecessary, and so our roles in the relationship shifted.
each site: • The Cystic Fibrosis Foundation’s website provides updates Dating is tough enough without, ‘Oh, by the way, I have this mucus issue?
The Cystic Fibrosis Foundation CFF is a c 3 non-profit organization in the United States established to provide the means to cure cystic fibrosis CF and ensure that those living with CF live long and productive lives. The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis. The Foundation was established in by a group of volunteers in Philadelphia, Pennsylvania.
In addition to providing grants for research into cystic fibrosis and supporting clinical trials, the foundation promotes and accredits specialized centers for treatment of individuals with cystic fibrosis. The Foundation has over 80 chapters and offices across the United States. Before it began using the current name, the organization was known as the “National Cystic Fibrosis Research Foundation”.
Living with CF: A Partner’s Perspective
How long someone with CF can expect to live depends on their age and the stage of their condition. Before the s, about half of the people with CF did not live into their 20s. However, over the past few decades, life expectancy for people with this condition has improved dramatically. Thanks to advances in treatment and care, people with CF can now expect to live much longer.
Several factors — including sex, lifestyle choices, any infections, and the type of CF gene mutation that a person has — can influence life expectancy. Some research has reported that people with CF find information on life expectancy to be useful.
Study record managers: refer to the Data Element Definitions if submitting registration or results information. This study will examine the experience of disclosing a cystic fibrosis CF diagnosis to a dating partner. CF has implications for potential life partners issues of fertility, decreased life span and an increasing need for medical management with age that may make disclosure particularly sensitive. An understanding of the disclosure process may provide insight into ways health care practitioners can support their patients during this process.
People between 21 and 35 years of age with CF who have been in at least one dating relationship may be eligible for this study. Participants are interviewed by telephone about their experiences living with cystic fibrosis and telling dating partners about their diagnosis. The interview includes questions about:. The interview lasts about 60 minutes and is tape-recorded for later review and analysis.
Cystic fibrosis CF is an autosomal recessive chronic medical condition. As medical treatment is improving more persons with CF are living into adulthood and are entering into serious dating relationships. A diagnosis of CF has medical implications of concern to potential life partners including infertility, decreased life span and an increasing need for medical management with age. In addition, there is a small but non negligible possibility of future children inheriting the condition.
These implications may make this type of disclosure a particularly important event in one’s life and may affect one’s disclosure decisions.
What You Need to Know About Romance, or the Lack of, When You Have CF
I actually had no idea what CF was, so straight to the Google machine I went! Armed with a wealth of definitions and abbreviations, I was absolutely none the wiser. Sasha and I had already spoken a few times and were getting on really well. I was looking forward to our date, so I stopped trying to figure out the condition and just went with it.
During the night later, the conversation seemed to naturally steer towards CF. Perhaps after Sasha had coughed again and casually said that it was a CF cough like I would have any idea how to identify one she probably noticed the expression on my face.
Although cystic fibrosis is a rare disease, in some schools there may be more than one person with CF present. Germs are a major concern for people with CF,.
Return to blog. Dating and intimacy can be both desired as well as confusing, or even become quite complicated to navigate; certainly when trying to determine how or when to handle discussing cystic fibrosis with your new partner. Telling people you have CF is a personal choice, and you actually do not have to disclose it to every person you meet. With that said, maintaining our health to reduce many of the unwanted CF symptoms means that we have to regularly participate in taking medications, completing treatments, and engaging in good hygiene practices.
Because of this, logistically, we have to acknowledge that when we engage in closer, intimate relationships — these people now become part of our support system and ultimately have to learn about and understand what we need to do to maintain healthy outcomes. There is no specific timeline or rule on including your partner into your medical regimen; however I must emphasize the benefit to you, as well as the relationship of welcoming that person into your support system.
It will impact factors such as honesty, openness, ability to welcome supportive assistance, participation in healthy boundaries and assertive communication, as well as engaging in vulnerability and trust. Practice what to say. Engage in practice conversations with your trusted friend s ; ask your friend to be a sounding board about the situation. To avoid fumbling through the conversation uncomfortably, practice giving your friend important facts about CF.
Revealing [too much] too soon may unfortunately define you before your date has gotten a chance to really get to know YOU. There are recommendations out there, which suggest sharing by the fourth date, merely to deter frustration longevity related to the deal-breaker.
TWEENS & TEENS
Current treatments for cystic fibrosis are not suitable for all patients and have a limited effect on this life-threatening disease. But new advances in the field promise to overcome these hurdles. The cause of cystic fibrosis is very straightforward. Its treatment, however, is not. People diagnosed with cystic fibrosis have a mutation in a gene called CFTR.
Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content.
We talked online for a week before actually meeting in person. During that week he told me that he had CF. Having no idea what CF was, I immediately went online and started researching it, trying to understand what it meant. Images of hospitals and doctors appointments immediately flashed through my mind. So many mixed feelings. Such an important decision to make. But most of all, I felt scared. Afraid of the guarantee of declining health.
Afraid of getting close to someone just to lose them again. So I took the time to think about if it was worth it.