Opinion

‘Cure sometimes, treat often, comfort always’: The importance of support networks

I have an exceedingly rare disease. In September, I was diagnosed with Chronic Active Epstein-Barr Virus (CAEBV). It is a rare complication of the Epstein-Barr Virus, well known for its most common symptom, mononucleosis (colloquially referred to as mono). I’m told by rare disease researchers that the occurrence of CAEBV is rarer than one in 1 million. It is a chronic, progressive disease with a high mortality rate.

Though the immediate prognosis is better than some illnesses – I have a 60 per cent chance at surviving five years as opposed to surviving just a few months as can be the case with some cancers – the end result is that this disease will end my life early. I’m 35 years old and there is no sound curative treatment.

All of the medical professionals I have encountered throughout my diagnostic journey have been incredibly kind, knowledgeable, open and willing to take the extra time to settle any questions I may have had – at least as best they could. The doctors, nurses, receptionists, clerks and technicians have all been exceptional. On some level the journey has been fascinating as modern medicine truly is astonishing. However, a significant piece is missing: How can medical professionals best care for an untreatable patient?

So rare is my illness that there is no known, common path of progression among the few diagnosed globally. No typical path of symptomatic progression, only a common fatal outcome. There is no support group or network to rely on. There are medical publications that speak to the limitations of potential treatments on the disease but not to the likely course the disease may take.

The path and timeline of events to befall me is a vast unknown, harder to process than the reality of the diagnosis itself. Research focuses on the medicine, but not the human.

The crux of my main struggle is how to plan for a future where so much of it is unknown? Do I have two years, five years, or maybe seven remaining? No one knows. When is the right time to take leave from work and focus on myself, family and friends? There is no calculation to help determine that.

Young and ambitious, my wife and I have put ourselves and our careers first – we have both been very fortunate and have excelled. Children have always been part of our dream but what now if my future is limited? Even if I have years left, what will the quality of life during those years be? At the moment, medicine is unable to guide me through many of these gaps. A support network of fellow sufferers, though not able to precisely be applied to my own personal situation, could at least offer examples of how people who have come before me have worked through these issues. At the moment I simply strive forward, one day at a time, with no answer to such questions.

I thrive on data, I always have. The more information I can gather about a situation, the better. Facing a chronic, progressive illness, I am no less information hungry. The problem is, it just doesn’t exist – or at least not that I can find.

I have started tracking my vitals at home in an attempt to try to anticipate “bad days” versus good. Daily, without fail I log my temperature. By chance, prior to the onset of symptoms earlier in the year I began wearing a fitness tracker. The device tracks, among other things, heart rate, respiration rate, sleeping heart rate, oxygen saturation and heart rate variability (or HRV). I log all of this information daily, part of my quest to learn and anticipate my future.

Indeed, there is one measurement that has had some reliability in allowing me to potentially forecast a bad day, heart rate variability. A rapid decline in this metric in the past has been an accurate predictor of a bad day or series of bad days, though I generally know the moment I awake in the morning what kind of day I will be facing, without having to view the data.

I am not alone in this scenario. In fact, these days I have ample company in the category of unusual diagnosis with an unknown progression. The emergence of COVID-19 has been a global lesson in how to deal with a novel disease that induces an uncertain future. Indeed, you may contract COVID-19 and be completely asymptomatic. However, you may contract the virus and go through a terrifying sequence of symptoms, possibly requiring hospitalization. For many, isolation, whether out of fear or public health measures, is a reality. Some who fall ill are forced to battle the disease from home, alone and without immediate medical supervision, feeling symptoms worsen and fearing the worst outcome.

How can the medical profession help, encourage and support those with too rare or too new of a disease that mass-medicine has not yet had the time or resources to focus on the problem?

The professionals who make up our health networks, hospitals and primary care facilities are nothing short of amazing and do their best each day to improve the quality of life for their patients. But there are instances where medicine does not yet have a complete answer for a situation. Then what?

By their nature, rare diseases or novel viruses are difficult to diagnose and to predict because they are indeed just that – rare, or new. However, there is a great commonality between them: each disease has a patient, a person; someone who can offer a perspective to others fighting the same or similar illness; someone who potentially has ample first-hand experience living through a prognosis that could benefit someone else. In a strange way, if I could share my experience with someone and help eliminate the gaps or missing puzzle pieces for them, that would not only help them but me, too. There could be some good to come from a rare diagnosis, rather than decline, uncertainty and a lifespan ended early. I would feel genuinely useful, regardless of whether the good days outnumber the bad.

Medical professionals cannot be available to every patient 24 hours a day, seven days a week. But, networks of likeminded, or in this case, like-symptomed or diagnosed people could be. A reliable, secure network where general information can be shared, and where people going through similar situations can encourage and comfort one another, can have enormous positive impacts. For those suffering with a chronic disease, or otherwise, the simple knowledge that you are not confronting disease alone can add hope, but also strengthen a burdened healthcare system.

For a COVID-19 sufferer who is isolated at home, having a network or simply a single like-diagnosed person to reach out to could mean the difference between panic or a more considered approach to a new symptom. For someone with a rare disease, a connection with a similarly diagnosed patient, or a patient undergoing a similar situation can be a guiding light – a kind of medical sponsor of sorts, not unlike the structure of support groups dealing with addiction.

I find myself in the unique position of being both an “interesting medical case” yet one that has been understudied to date. A medical case for which answers exist as to what does not work for treatment but for which answers do not exist for the patient experience. I might be dying but I still have life to live. What will it be like? More than willing to take part in tests to discover more about CAEBV, I am unable to find current research studies on the issue within Canada. I am willing to be a support for others with the same diagnosis but I am unable to find individuals who are still surviving and who have officially been diagnosed in order to offer comfort and friendship.

There is a famous line attributed to Edward Trudeau and related to health professionals, “cure sometimes, treat often, comfort always.” Where medicine falls short of addressing the full range of a disease, comfort is what remains. Comfort from the medical team but from a reliable support network and yes, other patients, too.

If medical treatment is not an option due to an overwhelmed system in the time of COVID-19 or the limitations of modern medicine mean that “cure sometimes and treat often” may not be options, the promise instead lies within “comfort always,” which can be achieved outside of a hospital room but may in fact be just as medically impactful.

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5 Comments
  • Tashi Louise says:

    Hi Brent, Have you been checked for genetic MAGT1 mutation? Even if this is not underlying factor magnesium threonate is a supplement you should include. Also look at the studies on herpetic/EBV virus/cancer and betulinic acid (you can extract it with a hot water extraction of birch bark). Look at study on triptolide (thunder god vine and EBNA1 inhibition). Have you checked your retinol and zinc levels? Chronic viral infections can deplete them and then the immune system malfunctions. If low you’ll need retinyl palmitate supplements specifically. See studies on lactoferrin and reducing ebv induced inflammation. I also suggest testing yourself for mycotoxin poisoning (exposure from water a damaged building) great plains labs urine mycotox test. Many of us with reactivated viruses (I am aware CAEBV is different) have discovered this is the primary cause of immune dysfunction.Not much published research in humans, mostly animals but there are some doctors specializing in it. It’ll send you down a rabbit hole but i recovered from 2 yrs bed bound with multiple viral reactivations by treating the mycotoxin issue, primarily using binders that sequester and remove bile acids. Best wishes

  • Randy Filinski says:

    Thank you for sharing your incredible complex story at such a young age and talking about the big questions one faces along the way. Healthcare can be one of the key relationships as you have outlined and the science has taken us to new levels of capabilities…but then we go home, and are confronted with the questions you ask.

    I have learned to open up my own network to both share and learn…and it is the human thing to do.

    Again, thank you.

  • Linda says:

    Hi: Great article. I would just like to comment that there are an estimated million Canadians that suffer from a multi system biological disorder called Myalgic Encephalomylitis(ME), formerly known as Chronic Fatigue Syndrome, most often also associated with Epstein Barr. This disease has been in existence for decades now and has a plethora of science to attribute to it’s multi system biological disorder. The medical establishment, chose not to educate doctors on this disease, because they decided it was a non disease(now that’s science?)
    It is recognized by the CDC, NIH, and Canadian government and yet not by Canadian doctors as a multi system biological disorder. It is a post viral syndrome that affects brain temperature, muscles, cardio vascular system, gastro intestinal system and yet the only support received for these seriously ill patients, is from the support groups that have formed, which include doctors that also have been diagnosed with this very debilitating disease. Now, with post viral syndrome from COVID(long haulers), there is a great deal of attention but no link to ME. We need a complete overhaul of this hierarchal medical system, where science can be ignored and schools can pick and choose what they want to teach our doctors, that are paid from our taxes. It is a disgrace to science. Any doctors that have chosen not to educate themselves on this disease, when they probably all have patients with this disease, need to find another career. If you are being paid to use science to treat patients then quit using guess medicine and political opinion. Keep up with the science. You are doing further harm to these million people in Canada, and living with this disease is enough of a punishment. If you have any integrity at all, then insist that your medical schools clearly outline that this disease is not a psychological disorder, as was recently seen in a book sold by Western University in London for doctors, and teach the real science behind this disease to all doctors in Canada. Though I appreciate the work of the front line doctors and nurses through this pandemic, it is time for a complete overhaul of our highly political, insensitive and financially driven medical system in Canada. Let’s get away from politics that harm and back to science that heals.

  • Catherine du Puy says:

    HI Brent – very interesting article. I am an Advanced Care Paramedic, and am currently finishing my BHScn. I have read your article and find it very interesting. First of all because years back I too was told I had chronic Epstein Barr after having been diagnosed with mono while I was 19. I was still sick for months afterwards and no one could figure out what or why but that I had consistent elevated titres. Long story short, I went on with life living with an illness that no one in the medical community believed in. It was all in my head. I have for the past 8 years of my life been living the ever changing non explainable constant medical “weird” things that happen ….. and have been through hyper/hypoparathyroidism. I would love to chat? or have some information on what you know or what other know of this continual Epstein Barr situation.
    I am so sorry to hear that you too have been going through chronic illness. Your article is great and I wish you well with your Maters.

  • Tashfeen says:

    Great article with an inspirational mantra … “comfort always”. I hope you find a treatment soon and keep writing such motivational gems.
    I wish you healthy life and godspeed.
    Tash

Author

Brent Leonard

Contributor

Brent Leonard is a senior member of the finance team at a health tech start-up and has more than 15 years of experience in software and start-up firms. He is currently enrolled in the Master of Health Administration program at the University of Ottawa.