Looking Forward: A Time of Hope for Pituitary Patients

From the desk of Linda M. Rio, MA, MFT – Marriage and Family Therapists and PWN contributor – Hope, in such a year as unique as 2020 is a more important word than ever not only for those with the challenges of a pituitary disorder but for all.  As any year comes to a close it is customary to look back at the highlights and low points of the past twelve months. For so many reasons this will be a year not long forgotten in history. As this eventful year ends and the world is at the apex of a worldwide pandemic it can be easy to view and recall only the difficult, painful, lonely times.  Of course, there have been true tragedies involving illness and loss of life due to COVID-19 along with economic, social, and psychological devastation suffered by many which are secondary, but nearly as impactful as the virus itself. Social and racial unrest, disruption, anger, and violence have also enveloped this year. In the U.S. the election has brought to light much discord, uncertainty, and intense emotions.

If we are as a species to survive all these and all the other “normal” tragedies we do also need, crave to find the bright spots among a lot of darkness. Humans throughout existence have a remarkable way of surviving in part by finding hope, being resilient. If we look to the ancient Chinese symbol for “crisis” which is divided into two parts: one-half means “danger”, the other half “opportunity”, we can also find a positive direction to look.

Pituitary World News published articles by Dr. Blevins, Jorge Faccinetti, and myself over a year ago promoting the potential benefits and future of Telemedicine. At the time this was still a relatively new method of delivery of medical and psychological care to patients. All it took was a pandemic to almost instantly shift the world into not only knowing about Telemedicine but having state laws and insurance regulations allow this as a way to more safely access medical services.

On an interesting side note, the National Governors Association, an organization whose purpose is to identify priority issues for states, recently sent a report titled “The Future of Telehealth Policy” with key considerations for Governors for telemedicine policy.

Currently, pituitary patients have the remarkable ability to obtain medical guidance from what has been researched as the most optimum treatments for these disorders. There are simply some medical ailments that must be treated by only highly trained specialists available only at Centers of Excellence. Until this year accessing such specialists would only mean for many patients traveling sometimes great distances, or not getting the necessary services at all. But due to COVID-19 orders, doctors are now able to “see” patients across state lines making not only the services more available but less costly and life-disturbing as well!

Now more than ever in history information is available to patients and their family members as a way to understand and cope better with their illness. Podcasts, webinars, YouTube, Facebook, and other social media patient-specific rooms and much, much more are available. The day will soon come when talking about pituitary disorders will no longer be so unusual or unknown because of the sheer volume of information now available. Many of the large medical institutions, such as the University of California San Francisco, are now hosting pituitary patient conferences. This year some of these had to be canceled or postponed but others creatively found a way to host these online. No “Zoom meeting” is quite the same as the opportunity to talk and interact at a live venue but at least this is now an option. I recently had the honor to present at one of these events and was contacted afterward by patients from several continents requesting information from me. This would never have occurred as a result of a live event only.

Patient support groups until recently have been hard to find and hard to sustain. A well-run patient support group can supply so much more than education about a disease. These groups offer a different kind of medicine, the kind that only happens patient to patient. Having someone who truly understands because they are going through the same or similar things doesn’t come in a pill and is priceless. Family members too can benefit so much from learning more about the illness and hearing that their perspectives are highly valued as well! If more of these support groups are hosted online doctors and patients can benefit in the overall well-being of the patient.

New medical treatments have been approved and are on the horizon for pituitary disorders. And, of course, advances in highly precise surgical treatments continue to show remarkable recovery that was never before possible.

Patients and family members can now even spread awareness and education about pituitary disorders by the clothes they wear! PWN recently let readers know a fun way to contribute funds to continued research by purchasing and wearing clothing with a message.

So, 2020 has most certainly been a challenging year!  And all these global issues do not even address the very personal challenges those who discover they have a tumor or other disorder of their pituitary face.  The day-to-day, sometimes hour-by-hour struggles that come with having a rare, sometimes debilitating illness are hard to describe. But indeed there is hope, and hope is needed to get through not only a pandemic but everything else 2020 has thrown at us. As there does appear to be a light at the end of this dark tunnel with vaccines on the way we all need to endure a little longer. Knowing there is hope can inspire us all to hold on a while longer.

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Our thanks to Linda Rio, Marriage and Family Therapists, for providing this critical information and being a valued contributor to our publication. Read Linda’s past articles on PWN and learn more at her website at www.lindamrio.com.

Linda M. Rio, M.A., LMFT is a PWN contributor and author.  Her latest book “The Hormone Factor in Mental Health” is available through Amazon.com and other major booksellers.

 

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