A Rare Disease Perspective During COVID-19. Self-Isolation and Social Distancing: A Way of Life for Some

For better or for worse, the coronavirus hasn’t significantly affected my lifestyle.  I have been self-isolating, using a mask in public places and avoiding large social gatherings for many years.  Ironically, I don’t use hand sanitizers because I can’t tolerate them.  Due to special dietary needs and sensitivities to personal care products, I have been buying what I need in bulk when it‘s available and on sale.  I become most concerned when medications that I rely on to survive are on back order or hard to find.  

As for medical assistance, I’ve been fortunate to have a healthcare team that has been allowing me to have phone visits for some time.  Hospitals have always been a double-edged sword.  We often have to decide whether a visit to the Emergency Department warrants the risk of contracting something that will negatively affect my health.  

 Unfortunately, I am not alone.  I share variations of my situation with an estimated 350 million people  world-wide who have rare, chronic medical conditions and/or a compromised immune system.  More than half of them are children and sadly, too many of them do not reach adulthood. Rare diseases can take years to diagnose and cures are not yet available. Ninety-five per cent of the drugs being used to treat them are not FDA-approved and have to often be administered on a trial and error basis.  There are more than 7000 rare disorders.  Dedicated researchers, often powered by concerned parents, are making progress.  They urgently require additional funding and government support to help save lives.  

 I think that members of the rare diseases community have a good understanding and can relate to the impact caused by the restrictions imposed by the coronavirus.  Some of us know from personal experience for example, how difficult it is to not be able to have people over or attend special events with those we care about.   Many have also experienced a loss of employment and financial hardship due to our health issues or that of a family member.  

 While life can become overwhelming at times, I am learning to appreciate and rely on the incredible strength and resilience that comes from within and is available to each of us. I wish I could introduce you to some of our brave young patients who are so much wiser than their years.  They could teach us all a thing or two about being curious, enjoying simple pleasures and living life wholeheartedly. Living with uncertainty isn’t easy for any of us and it’s important to remember that you are not alone.    My hope is that we will get through this crisis together and that in the process, we will begin to create a more united and compassionate world.  

 Marilena Manserra MSW                                                                                            

Note:  I would like to take this opportunity to thank everyone who is making an extra effort to ensure the care and safety of vulnerable members of the community as well as those who are putting their own health at risk to serve and protect us all.