Imagine yourself at a doctor’s office. The white fluorescent lights flicker above, while you change into a shapeless cotton gown, and stare at framed art you recall seeing during your last trip to Goodwill -- when you still felt well.
You’re visiting the doctor today because you’ve had a collection of bothersome and persistent symptoms and it was time to get a medical opinion on the matter. The doctor examines you and orders some blood or other diagnostic tests. By the time the results for these diagnostics come, you’d likely be back at home or work.
At best, you’ll receive a phone call from a staffer telling you all is fine and to come back in 6 weeks if the symptoms do not subside. Or, you’ll get the doctor on the line, who’ll explain that she has diagnosed you with a condition. She’ll likely mention the condition once, and then will quickly move on to your treatment options, if there are any. She’ll spend just a few minutes on the phone with you because she has ten other patients to call today and twenty-two more to examine. Hopefully, you would’ve written down the name of your condition on a piece of paper, and hopefully it will not be as rare or as multisyllabic as the conditions in which I have been involved during most my career in biotech (e.g: muccopolysacharidosis, phenylketonuria, adrenoleukodystrophy, etc.).
What is the first thing you’ll do now?
You will Google the name of the condition to learn more about it, because three minutes on the phone with your doctor is not nearly sufficient time to absorb such important information about the state of your body. When you’ll Google, you’ll get a bevy of links to click on. Some will look more legitimate than others and you’ll have to use your intuition to decipher the truth. At this point you may feel overwhelmed by processing this medical information. You may also feel alone; you’ll think that you are the only one going through this situation and you’ll forget that disease is a unifying human condition.
But hopefully, you will not forget that you have company you might also take to Facebook to look for an open group, closed group, patient support page or patient advocacy page, where you might find others with this condition.
Searching on Google or searching on Facebook in the week following a new diagnosis is now a predictable behavior for any person owning an internet-connected device (desktop, laptop, tablet or phone).
If you were visiting the doctor in order to achieve a diagnosis for your child, then you are even more likely to make an effort to learn more about the condition and find support and community in a group of other parents who are walking the same path as you. And if your or your child’s diagnosis ends up being a rare disease, defined as a condition that affects 200,000 or less people in the United States, then you will be even more likely to seek education and support online, because the likelihood of achieving this in the offline
As you search on Google and Facebook, I’ll be cheering you on, because what you are doing is you are seeking your health. Health begins with knowledge: understanding how our bodies function, the conditions they may have inherited or developed, the causes of such conditions and the available treatments or lifestyle modifications that can help you relieve symptoms or cure you.
But, I will also cross my fingers for you because I know a few harsh realities:
- medical information is hardly ever written in a language that patients can understand
- patient support groups are not always available for every condition, and
- some information, such as clinical trials for a given condition, can be painfully difficult to find or comprehend unless the biopharmaceutical company has taken steps to educate patients (which is what we do at Seeker Health).
Over the next few months, I’ll be sharing some tips for finding resources to learn about your disease, to find others with a similar condition and to collaborate with other parties (like biotech companies) working to develop treatments.