Covid-19 and Rare Diseases

It seems almost impossible to go a day or, indeed, an hour without mention of Covid-19. We’ve all had a lot more time to ponder what we consider what we value. I think most of us can unequivocally say that the health and safety of our nearest and dearest is a top priority. The response to the Coronavirus pandemic shows this, more than ever. We don’t miss material possessions, we miss our grandparents, friends and other family members. We also value the NHS now more than ever. To those out there, on the front line, as a student nurse or a pharmacist, thank you from me and mine to you and yours.

But what about those of us with rare and often complex diseases?

Where do stand in all of this?

These questions, in my eyes, are a two-pronged problem which require special attention and cannot be applied for everyone. People HAVE to be treated as individuals.

Those with serious conditions are shielded, this is common knowledge. However, what about those of us with complex diseases? EoE was discovered in 1978 meaning it is a relatively new, yet chronic, disease. As with all illnesses the effects of coronavirus on such a disease are unclear. As the pandemic began my biggest fear was to become a statistic, I did not want to be cast off as a tragic case of a young person claimed by the virus simply because they had ‘underlying health conditions.’

I, personally, have not received a shielded letter, so, I continue to work as a key worker. I know of people with EoE receiving such letters, however, this is not widespread. Often, people want reassurance, I fall into this category. I want my Gastro specialist to reassure me that my disease and the medication I take will not limit my ability to fight this unforgiving virus, if I was to catch it.

The other prong of this problem is that rare diseases do not simply stop because of a pandemic. In my personal experience, symptoms worsen with stress. Despite having a dilatation of my oesophagus in March, (post coming soon! 😉 ) I am still having obstructions of solid food and choking on liquids. In cases where I would phone NHS24 I have decided to try sleep it off. I DO NOT RECOMMEND THIS if you experience choking as it can cut off your air supply, however, I, am an idiot. This is down to a fear of the current situation in hospitals and not wanting to worsen the pressure on a service we currently all hold so dear. I have every faith in our healthcare system, I am not an urgent patient, I don’t urgently need the service.

On that note, I’d like to share a link to a piece of music that gets me through some of the grey days.

On that note, I’d like to share a link to a piece of music that gets me through some of the grey days.

So, I will leave you with a phrase you’ve not heard before…

Stay Home and Stay Safe x