Cystic fibrosis patients dating each other
The most tragic love story most of us have ingrained in our memories is Romeo and Juliet. Not a tale of two cystic fibrosis CF patients. Well, at least that was most likely the case until last night Grey's Anatomy might just be a primetime drama, but it sure has a way of turning our attention to tragic medical situations that would otherwise fly under the radar. The most recent episode featured a couple who both suffered from cystic fibrosis , a genetic disease that causes sticky mucus to build up in the lungs and digestive tract. Two CF patients in a relationship is a no-no to the medical community.
You’ll need a new login link.
This is an intentionally polarized opinion presented as part of a debate. A pro—con debate works best by exaggerating two opposing points of view as a way of stimulating an open discussion. When, however, the same debate is written down the arguments can be taken out of context and so be misleading. The middle ground between two polarized positions can be lost, and in a supremely important area such as cross-infection this can be dangerous. This article must not, therefore, be taken as definitive but rather as a contribution to a vitally important discussion about how best to run a cystic fibrosis CF service.
First some definitions. Segregation for this debate means cohort segregation or the clustering of people with CF either as in- or out-patients according to the bacteria that they carry. This is not the same thing as infection control. Cohort segregation may or may not be a part of the much more complex business of infection control but can never be the whole story. A clinic could have infection control without segregation. It could do this by ensuring no contact between patients as a part of best practice infection control.
Conversely, it would be possible to have segregation without infection control, if for example patients came to a Pseudomonas-only clinic but the doctors did not wash their hands. The American guidelines for infection control in CF recommend strict infection control without cohort segregation while the UK prefers a combination of both and puts great emphasis on cohort segregation.
I will present two main arguments. First, that infection control is essential, complex, many faceted and far more important than cohort segregation. Second, that cohort segregation is an illusion. It is illogical, unrealistic, ignores the complexity of CF microbiology and is occasionally harmful. Also, it can deflect attention from much more important issues of good infection control and is therefore not good for our patients.
Of course it is. There have been a number of catastrophic outbreaks causing huge distress among patients and staff at a limited number of CF centres. When we look closer, however, the precise causes of these outbreaks is somewhat mysterious. In the first place they are surprisingly limited in time and space. The same, or apparently the same, strains of bacteria have caused a number of deaths over a short period in one clinic but seem to have been less of a problem elsewhere. The same pattern was reported from a Burkholderia cepacia complex Bcc outbreak in Edinburgh.
Following these outbreaks there has been a rush to blame the organism and by association the individuals who carry it. This reaction seems altogether too simplistic. Alternatively they are genuinely the same but other factors are involved and we are missing something. Of particular concern is the multiplicity of bacteria and viruses in a CF lung; this could mean that a combination of bacteria x with virus y can be disastrous when either alone is not.
Whatever is going on it seems to me to be much more complicated that one vicious strain jumping from patient to patient. This leads on to the question of how these outbreaks occur. If we accept that the same organism spreads from one person with CF to another, this could happen by direct contact between patients or indirect transmission via the environment or hospital staff. The segregationists like to blame a combination of the organism and the patient. Their argument seems to be that segregating people into a few groups by bacterial species will prevent all other routes of transmission.
This seems unbelievably simplistic and it ignores a number of facts. Pseudomonads are perhaps the most abundant life form on the planet and have evolved many ways of surviving and moving from host to host other than by direct contact. The hospital environment is heavily colonized by bacteria such as Pseudomonas and hospital hygiene has not always been ideal.
Hospital staff have been lax about infection control over the period that the cross-infection outbreaks have occurred and contact between staff and patient is at least as close and frequent as between patient and patient. Hospital cross-infection is a much wider problem than a CF clinic: Segregation by organism might be sensible if there were only a few bacteria involved and they remained constant.
Sadly this is not the case. Clinicians receive laboratory results that mention the bacteria that are looked for and so get a false idea that CF microbiology is simple. Leaving aside the difficulties of identity and stability of the individual strains of Pseudomonas referred to above, the microbiology is horrendously complex. Even if this variety remained constant, and is seems pretty unlikely that it does, how do we separate people with CF into logical groups according to their sputum microbiology?
Do we segregate according to a single organism, as single strain or some combination of organisms and strains? Are interactions between micro-organisms important? Do host factors matter, so that some organisms may be bad in one person but gentle in another? There seems to be too much complexity and too much ignorance for simple answers. For segregation to be logical and feasible we should know what bacteria, fungi and viruses matter and which one two, three or 60 each person is carrying.
We cannot do this. In the first place the best information is always out of date. When someone with CF makes a booking for a clinic the sputum result refers to some day in the past. It may be within the last week but more often is 2—3 months previously and by the time the clinic happens it may be even longer. While in the chronic stable state the organisms may be the same, and so it may be reasonable to use out-of-date information for a routine visit, the microbiology may change at the time of a clinical deterioration.
The next problem is what should be sent to the laboratory. Many people with CF do not cough sputum and so throat or cough swabs are used. These may or may not be a good reflection of what is or will later be present in the lungs. Perhaps the biggest problem is that we do not know what really matters. The history of CF has been one of blaming different bacteria. Staphylococcus aureus was the first, there was then a brief period of concern about Haemophilus influenzae , followed by a long period in which P.
Recently, new bacteria have been isolated and the importance of each is still being worked out. In the future there will be more. Finally different strains of the same species behave differently. For Bcc some genomovars are linked to clinical decline while others are not, and the same is probably true of P. This means that segregation by species may simply miss the point. Patients with P. By putting them together in a segregated clinic we may therefore be exposing the most vulnerable to a greater risk.
The Manchester clinic reported cross-infection with a new multi-resistant P. These data can be used to reach the opposite conclusion, namely that the segregated P. All these concerns and uncertainties argue that cohort segregation by bacterial species is an illusion. We do not know what bacteria a patient carries, we do not know what matters, we cannot define a few simple groups based on bacteriology which will either limit cross-infection or its consequences, and cohort segregation does not prevent cross-infection within the cohort.
It therefore seems more logical to assume that every patient is a potential risk to every other patient and that minimal contact and optimal general infection control measures are the best approach. It can be argued that even with all these uncertainties and difficulties segregation may help a bit and anyway does no harm. Again, sadly, this is not the case. This means that when it is first isolated from someone with CF this is taken as a disaster and leads at best to concern and at worst to terror.
In reality, the rate of decline in lung function in CF patients with P. There have been reports of parents preventing their children playing outside because of the fear of P. Let's look at some examples of what may happen if we over-stress segregation:. Two brothers stopped seeing each other because one acquired Bcc. The request was refused and they never met again. Should the girl have been segregated from these two relatives?
The rest of the story, which may provide the answer, is given at the end of the text. The message is clear. Segregation can do harm. If it also does good then clearly a balance must be struck. However, the burden of proof rests with the segregationists. Infection control measures should be the best available and applied equally regardless of the organisms isolated. Cohort segregation is practically difficult and at best incomplete due to ignorance of current microbiology.
The burden of proof rests with the segregationalists to show that it does more good than harm. The patient's two relatives were her parents. She remains well with normal lung function at the age of In this case, strict separation of family members would have done more harm than good. National Center for Biotechnology Information , U. J R Soc Med.
Duncan Geddes , Professor of Respiratory Medicine. Author information Copyright and License information Disclaimer. This article has been cited by other articles in PMC. Introduction This is an intentionally polarized opinion presented as part of a debate. Is cross-infection a problem is CF? Cross-infection — how and why If we accept that the same organism spreads from one person with CF to another, this could happen by direct contact between patients or indirect transmission via the environment or hospital staff.
This video from the Cystic Fibrosis Trust in the U.K. discusses the dangers of cross-infection for cystic fibrosis patients. Cross infection is when two people living with cystic fibrosis (CF) meet and pass infections from one to another. Two cystic fibrosis patients meeting each. Late one night on Facebook, a girl with cystic fibrosis messaged a boy with Katie and Dalton met as patients dealing with cystic fibrosis; Two.
This copy is for your personal non-commercial use only. Cystic fibrosis is known as a devastating disease that causes severe respiratory problems and interferes with digestion because of thick mucous in the lungs. As of this week, the roughly 4, CF patients across the country, their families and friends have a new way to connect.
Over the past 20 years there has been a greater interest in infection control in cystic fibrosis CF as patient-to-patient transmission of pathogens has been increasingly demonstrated in this unique patient population.
One foot makes all the difference in the world if it means getting closer to the one you love. Get tickets now.
Segregation is not good for patients with cystic fibrosis
Cystic fibrosis is the most common and most serious genetic disease in Caucasians. One in 2, Caucasian babies in the United States is born with this disease. This disease interferes with the working of the lungs and the digestive system. Even if there is no history of disease in your family, if you and your partner are both carriers, there is a 1 in 4 chance with each pregnancy that your child will have cystic fibrosis. For parents who are both carriers, there is a 1 in 4 chance with each pregnancy that the child will have cystic fibrosis.
Cystic Fibrosis Patients on 'Grey's Anatomy' Got a Bum Deal
I think many of us with cystic fibrosis CF have built up emotional walls around ourselves. These walls are built from the stones of fear and uncertainty, about being different, being unattractive, being unwanted. These walls make it difficult and usually impossible for those wanting to get close to us to break down. But everyone, every single person, has their own battles they face. Though the battles of someone with CF are great, it is our perspective that determines the effects they can have on our relationships with others — in this context, on our relationships with potential partners. Perspective, the viewpoint from which we approach a situation, can either be in a positive or negative light. Possibilities to have a wonderful time. Possibilities to build a connection with someone. I believe once we accept ourselves for the way our bodies are and have been created, we convey authenticity about ourselves. If we are being authentic in a relationship we show our true selves.
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.
Top 5 Things You (Probably) Don’t Know About Cystic Fibrosis
In this week's episode of Grey's Anatomy the docs of Seattle Grace Mercy West put an end to a relationship for the sake of the physical health of both parties involved. Ricky and Julia have cystic fibrosis and were thus a danger to each other's well-being. It made for powerful drama, but is it based in fact? Cystic fibrosis, or CF, is an inherited disease caused by a defective gene. It causes the body to generate extremely thick mucus which accumulates in the lungs and pancreas, causing respiratory and digestive problems. Symptoms include lung infections, chronic coughing, wheezing, poor growth, and weight gain. Fifty years ago, CF patients wouldn't live past childhood, but now, with advances in treatments and medications, CF patients can live well into adulthood and even middle-age. Currently, 70, people worldwide have the disease, and 1, more cases are diagnosed every year. The sad but true news is that cystic fibrosis patients do pose a threat to each other. That's because they carry specific types of antibiotic-resistent bacteria in their lungs that, if swapped, can cause lung infection. And chronic infection leads to lung damage which can shorten a CF patient's life span.
Cystic fibrosis often forces by toddler twins apart, reveals mother
By Daily Mail Reporter. Toddler twins Isobel and Alexander love to spend time together - but they must often stay apart in case they give each other life-threatening infections. Mother Zoe Elliott has to separate them because both her children have cystic fibrosis, which means they are prone to picking up bugs and infections. So if one of them is ill, the other must be kept well away. The genetically inherited condition affects the internal organs, especially the lungs and digestive system, clogging them with thick, sticky mucus. Zoe and Steve Elliot with their twins Isobel and Alexander who both have cystic fibrosis. Zoe Elliot, 38, from Nottingham, said:
What’s Cystic Fibrosis? Can People With the Disease Date Each Other?
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, but there are steps you can take to help students and faculty with CF lower the risk of cross infection. Medical studies show that people with CF are at particular risk of spreading certain germs among others with the disease. This is known as cross-infection. In people with CF, thick, sticky mucus that clogs the lungs also allows germs to thrive and multiply. This buildup makes them more susceptible to developing lung infections. Despite significant progress in treating CF , infections remain a serious problem and can lead to worsening lung disease and death.
Category: CF and Relationships
CNN Late one night on Facebook, a girl with cystic fibrosis messaged a boy with cystic fibrosis, and both their lives were changed forever. Stars Screen Binge Culture Media. Tech Innovate Gadget Mission: Facebook Twitter Instagram. Chat with us in Facebook Messenger. Find out what's happening in the world as it unfolds. A real 'Fault in Our Stars' couple.
Infection Control in Cystic Fibrosis
Being in a committed, loving, long-term relationship is a distinctly intimate experience. Would you like to hold hands for forever and accrue debt until we die? That, and watching each other poop. Chronic illness makes dating a thoroughly more vulnerable experience, and not just for the patient. You see, sickness affects everyone involved. It accelerates everything.
This is an intentionally polarized opinion presented as part of a debate. A pro—con debate works best by exaggerating two opposing points of view as a way of stimulating an open discussion. When, however, the same debate is written down the arguments can be taken out of context and so be misleading. The middle ground between two polarized positions can be lost, and in a supremely important area such as cross-infection this can be dangerous. This article must not, therefore, be taken as definitive but rather as a contribution to a vitally important discussion about how best to run a cystic fibrosis CF service. First some definitions.Couple Open Up About Cystic Fibrosis And Their Future - The Lie Detective